Just a quick recap, on Thursday, I mentioned that the physiotherapist explained to me my shortness of breath was caused due to my infection in the upper lobes of my lungs. I was off oxygen at rest on Friday which felt awesome. On Sat, I walked to the St. Lawerence Market and my lungs had a bit of a panic. I'm sure it was the cold, wind, and unexpected exertion. My oxygen sats dropped, my heart rate spiked despite the fact that I was walking as slow as a turtle and taking a ton of breaks. I ended up being on oxygen at 1-2L at rest when I returned to the hospital for the rest of the day as my lungs never seemed to recover.
On Sunday, Mom and I went off to the drop-in pottery class but this time cabbed it to try and give my lungs a break. I barely walked at all and felt as though I was walking very snail-like but kept getting super short of breath. It was beyond frustrating. Afterward, the doctor said that her explanation of why I was still short of breath despite my high lung function was because I had serious inflammation. Her theory was that I had a build up of stale air in my lungs due to my not exhaling completely. She was thinking of starting me on a anti-inflammatory today.
The doctors switched rotation today so I have a new attending doctor for this week. I kind of assumed he would have his own theories as to why the shortness of breath continued. While the doctors all work together, they all seem to have their own way of treating and testing things.
So I wasn't super surprised when in the morning, I was whisked off for a ECG with no real explanation as to why. And then in the afternoon, I was whisked off again for a CT scan. It was the gross one where they injected me with the radioactive dye that makes me think I'm peeing for about 5 seconds. It's not a pleasent time and is as random as it sounds.
The new doctor showed up around 5 to tell me the good and bad news. The good news is that they now know for sure why I'm short of breath. The bad news is that it's a blood clot.
Yup, that's right. I have a pulmonary embolism (aka blood clot in the lung). Gah!!!
To try to answer all your questions:
1) No, they don't know where it came from/how it happened, the doctor has a few theories but no solid answers. They did a leg ultrasound this evening and will do an arm one tomorrow which should inform them more.
2) No, they can't do anything about the actual clot. All they can do is start blood thinners to prevent any new ones and hope the clot dissolves quickly (within a few weeks).
3) No, this will not affect my transplant listing. If anything, it will probably make me higher priority. They can reverse the effects of the blood thinners if I get the call.
4) They started me on blood thinners tonight. They gave me the 'loading dose' (a giant dose) and then will be running it slowly during the night. They'll be closely monitoring the levels with blood checks every 4 hours (I don't expect to get much sleep) and adjusting as necessary.
5) They've stopped the IV antibiotics as of now. However, since I had a fever today, hey may give me a few more doses. Although now that my temperature is declining, they might not. I'm still waiting for the resident on call to show up and make a decision. He was suppose to be here three hours ago...the nurses are not pleased.
6) Finally, yes, I'm kind of freaking out. This is way more serious/terrifying than an infection or inflammation. However, I've calmed down slightly now that they seem to have a solid action plan.
I'll keep updating as I know more. The information seems to be changing or updating rather frequently. Seeing as I found out 6 hours ago and am now on blood thinners, this has been a lot to absorb in one evening.
Showing posts with label Pre-transplant. Show all posts
Showing posts with label Pre-transplant. Show all posts
Tuesday, 18 November 2014
Monday, 10 November 2014
In what seems to be my monthly hospital admittances.
In what seems to be a revolving door of sickness and health, I'm back at St. Mikes admitted for IV therapy. My goal to stay out of the hospital for the month of Nov lasted 9 days.
At physio on Thurs and Fri, I felt more short of breath than usual but my oxygen levels were still okay despite being down slightly. I passed it off as the cold weather or something. Until on Sat I felt short of breath walking around the apartment and then got super nauseous. When I threw up my '13 month celebration' meal, I decided it was time to call the doctor.
The doctor on call Sat night informed me that the respirology beds were full so I had to be admitted through emerg. I went in Sunday morning and spent the day hanging out in emerg waiting for a bed to open up. It actually wasn't as bad as I had been anticipating. They immediately whisked me off to a stretcher on the ward so I didn't have to wait in the waiting room with random people coughing and sneezing everywhere. I spent the afternoon knitting and listening to podcasts while peering through my curtain at everyone trying to diagnose the other patients.
That entertained me until they gave me my first dose of a IV antibiotic to which I had a minor allergic reaction. It wasn't super serious but my head was super itchy and my face got super flushed. The doctor informed me that the medication often causes the body to release histamines initially. They stopped the med for an hour and gave me a dose of IV Benadryl. Of course the respirologist showed up 20 minutes after the Benadryl admitted. I was much less itchy and very much feeling the effects of the Benadryl. I spent the entire conversation trying not to pass out and I'm pretty sure I said nonsensical things as I couldn't focus on anything. My conversation was basically "yes, everything good, IV itchy, wow this stuff super strong, all blurry, I sleep now."
By the time I made it out of my drug-induced nap, they had a bed on the gastrology/post-op floor.
I'm hoping desperately to get transferred to respirology tomorrow as while everyone is nice, they are not use to having people with CF. They tried to give me enough blood thinners for a "200lb 80 year old man who would be unable to get out of bed" (That was the quote from the horrified resident who read my chart today). Thankfully I refused to let them give it to me even though the nurse gave me a lecture on how I'll get blood clots from laying in bed all day (I promised her I would not spend all day laying in bed).
Also, because it's a post-op floor, they are super intense about monitoring fluid intake and output. So much so, that a man woke me up at 6am to ask me how much I peed in the night. I was so confused what he was asking me. I responded with a "what? ummm none, I was sleeping." He kept repeating "but how much did you pee?" "Ummm nothing. I went to sleep and woke up with you yelling at me about pee." I was not pleased. The PSW kept coming in all day to ask me exactly how much I had drank and how much and how often I peed. They are quite obsessed with it. Sigh. The respirology floor has increased my expectations of hospital stays. I need to somehow convince someone from there to leave.
But other than the urine obsession and blood thinners, the floor isn't that bad. I still get my CF menu and junk food and it's relatively quiet. The treatment plan is to continue the strong IV antibiotic (the itching did not continue with the subsequent doses) that should get rid of everything in my body. The CF doctor said today that they can't test my lung function tomorrow as it's considered a holiday for non-essential hospital staff (even though the rest of the province refuses), so they'll check it on Wed to see if I've had a sudden drop in lung function and to give them a better idea why I'm so short of breath when I do anything.
At physio on Thurs and Fri, I felt more short of breath than usual but my oxygen levels were still okay despite being down slightly. I passed it off as the cold weather or something. Until on Sat I felt short of breath walking around the apartment and then got super nauseous. When I threw up my '13 month celebration' meal, I decided it was time to call the doctor.
The doctor on call Sat night informed me that the respirology beds were full so I had to be admitted through emerg. I went in Sunday morning and spent the day hanging out in emerg waiting for a bed to open up. It actually wasn't as bad as I had been anticipating. They immediately whisked me off to a stretcher on the ward so I didn't have to wait in the waiting room with random people coughing and sneezing everywhere. I spent the afternoon knitting and listening to podcasts while peering through my curtain at everyone trying to diagnose the other patients.
That entertained me until they gave me my first dose of a IV antibiotic to which I had a minor allergic reaction. It wasn't super serious but my head was super itchy and my face got super flushed. The doctor informed me that the medication often causes the body to release histamines initially. They stopped the med for an hour and gave me a dose of IV Benadryl. Of course the respirologist showed up 20 minutes after the Benadryl admitted. I was much less itchy and very much feeling the effects of the Benadryl. I spent the entire conversation trying not to pass out and I'm pretty sure I said nonsensical things as I couldn't focus on anything. My conversation was basically "yes, everything good, IV itchy, wow this stuff super strong, all blurry, I sleep now."
By the time I made it out of my drug-induced nap, they had a bed on the gastrology/post-op floor.
I'm hoping desperately to get transferred to respirology tomorrow as while everyone is nice, they are not use to having people with CF. They tried to give me enough blood thinners for a "200lb 80 year old man who would be unable to get out of bed" (That was the quote from the horrified resident who read my chart today). Thankfully I refused to let them give it to me even though the nurse gave me a lecture on how I'll get blood clots from laying in bed all day (I promised her I would not spend all day laying in bed).
Also, because it's a post-op floor, they are super intense about monitoring fluid intake and output. So much so, that a man woke me up at 6am to ask me how much I peed in the night. I was so confused what he was asking me. I responded with a "what? ummm none, I was sleeping." He kept repeating "but how much did you pee?" "Ummm nothing. I went to sleep and woke up with you yelling at me about pee." I was not pleased. The PSW kept coming in all day to ask me exactly how much I had drank and how much and how often I peed. They are quite obsessed with it. Sigh. The respirology floor has increased my expectations of hospital stays. I need to somehow convince someone from there to leave.
But other than the urine obsession and blood thinners, the floor isn't that bad. I still get my CF menu and junk food and it's relatively quiet. The treatment plan is to continue the strong IV antibiotic (the itching did not continue with the subsequent doses) that should get rid of everything in my body. The CF doctor said today that they can't test my lung function tomorrow as it's considered a holiday for non-essential hospital staff (even though the rest of the province refuses), so they'll check it on Wed to see if I've had a sudden drop in lung function and to give them a better idea why I'm so short of breath when I do anything.
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| My lovely view! |
Saturday, 8 November 2014
Waiting Game:13 Months.
13 Months.
It's been a long month. My release from the hospital in September didn't last long and I was back in for 5 days in Oct. It doesn't look promising for me avoiding the place in Nov. My lungs aren't responding long-term to any of the meds they give me. By long term, I mean longer than two weeks.
The weather has also changed to be a little more grey and a lot more cold. I find it much harder to breath when a cold wind is blowing into my face. I really didn't want to do another winter in Toronto. It's so dry and cold and windy. I never want to leave the apartment already and it's only Nov. I guess the upside is that I may finally knit a pair of mittens.
I don't have much else to add, it's been a pretty bummer month healthwise. The one highlight of the month was having people visit. Nothing like seeing friends and family to make hospital stays and feeling unwell less dreadful.
I continue to remain in 'isolation' at physio. They put a barrier up between the treadmills so I basically have a corner I hang out in. However since it's right beside the water cooler, people cross it all the time to get a drink. It's so silly but I guess it's keeping the infection control people happy.
I woke up at 2 am last night in a panic because there was a constant beeping coming from somewhere. I was certain it was my pager going off even though my pager has a little ring tone and not a solid beep beep beep. The brain gets confused when it's being woken up at 2am. I finally realized it was two angry cars outside having a honking contest. Argh! It seems my brain is always on 'wait for call' mode. One of the many upsides of getting the transplant will be that I can finally sleep without fear that I'm going to miss my phone or the pager ringing.
My goal the next month is to stay out of the hospital. Or at least try to avoid getting the flu since I am too immunocompromised to get the flu shot. I will Purell everything!
It's been a long month. My release from the hospital in September didn't last long and I was back in for 5 days in Oct. It doesn't look promising for me avoiding the place in Nov. My lungs aren't responding long-term to any of the meds they give me. By long term, I mean longer than two weeks.
The weather has also changed to be a little more grey and a lot more cold. I find it much harder to breath when a cold wind is blowing into my face. I really didn't want to do another winter in Toronto. It's so dry and cold and windy. I never want to leave the apartment already and it's only Nov. I guess the upside is that I may finally knit a pair of mittens.
I don't have much else to add, it's been a pretty bummer month healthwise. The one highlight of the month was having people visit. Nothing like seeing friends and family to make hospital stays and feeling unwell less dreadful.
I continue to remain in 'isolation' at physio. They put a barrier up between the treadmills so I basically have a corner I hang out in. However since it's right beside the water cooler, people cross it all the time to get a drink. It's so silly but I guess it's keeping the infection control people happy.
I woke up at 2 am last night in a panic because there was a constant beeping coming from somewhere. I was certain it was my pager going off even though my pager has a little ring tone and not a solid beep beep beep. The brain gets confused when it's being woken up at 2am. I finally realized it was two angry cars outside having a honking contest. Argh! It seems my brain is always on 'wait for call' mode. One of the many upsides of getting the transplant will be that I can finally sleep without fear that I'm going to miss my phone or the pager ringing.
My goal the next month is to stay out of the hospital. Or at least try to avoid getting the flu since I am too immunocompromised to get the flu shot. I will Purell everything!
Wednesday, 5 November 2014
The neverending doctor appointments at St. Mikes.
This week is a week of doctor appointments. Or rather, two dr appointments. That is enough for me. Yesterday I had my transplant clinic which is the biggest waste of time for everybody. They basically have me tell them everything I've been doing at St. Mikes, ask me how far I can walk before getting short of breath, and send me on my way. It's usually all nurse practitioners so it never takes very long but it's still annoying to have to go just to tell them everything they could read on the computer. It would be different if I didn't have another hospital following me very closely. Now that I'm status 2, I will have those appointments monthly. Urg.
My useful doctor appointment was today. My lung function was down to a Fev1 of .70 , I don't know what percent that would be but my guess is 20% (I think .67 was 19% for me, so around the 19-21% area). It means that the spike was definitly from the medication and that my lungs aren't able to maintain the increase once the medication is gone.
The good thing, if you want to call it that, is that there was a recongized bug on the sputum culture so the doctor was able to prescribe a new oral antibiotic that targets the specific bug. It's one that I grew over two years ago and was hoping had gone forever but it has apparently returned to live another day.
They sent me home on the new oral antibiotic to take along with the one I was discharged home from the hospital on. I tried arguing that the latter one is doing nothing as my lungs decline while I'm on it so I should stop taking it but they kept me on it with arguments like 'research shows it's better to double the antibiotics to prevent superbugs.' Even though at this point, I'm probably one giant superbug seeing as I've overused antibiotics my entire life. Although I suppose it's probably best to avoid trying to create more.
My PICC line is still in, they said next week if I'm not admitted then they might consider pulling it. They were not very hopeful that I'll be off IV meds for very long. It's been flushing well ever since my trip to emerg. Maybe I'm just more forceful now in applying pressure or something because it's been flushing smoothly. It probably also helps that I'm diligent in flushing it every day whereas before I would leave it to every other day. One trip to the emergency department is enough for me, I have learned my lesson.
My useful doctor appointment was today. My lung function was down to a Fev1 of .70 , I don't know what percent that would be but my guess is 20% (I think .67 was 19% for me, so around the 19-21% area). It means that the spike was definitly from the medication and that my lungs aren't able to maintain the increase once the medication is gone.
The good thing, if you want to call it that, is that there was a recongized bug on the sputum culture so the doctor was able to prescribe a new oral antibiotic that targets the specific bug. It's one that I grew over two years ago and was hoping had gone forever but it has apparently returned to live another day.
They sent me home on the new oral antibiotic to take along with the one I was discharged home from the hospital on. I tried arguing that the latter one is doing nothing as my lungs decline while I'm on it so I should stop taking it but they kept me on it with arguments like 'research shows it's better to double the antibiotics to prevent superbugs.' Even though at this point, I'm probably one giant superbug seeing as I've overused antibiotics my entire life. Although I suppose it's probably best to avoid trying to create more.
My PICC line is still in, they said next week if I'm not admitted then they might consider pulling it. They were not very hopeful that I'll be off IV meds for very long. It's been flushing well ever since my trip to emerg. Maybe I'm just more forceful now in applying pressure or something because it's been flushing smoothly. It probably also helps that I'm diligent in flushing it every day whereas before I would leave it to every other day. One trip to the emergency department is enough for me, I have learned my lesson.
Thursday, 30 October 2014
Trip to emerg and home again.
I was all set for a relaxing day to let my stomach heal. In the afternoon, I tried to flush out my PICC line as I do every day, and it didn't flush. I tried a second time, no luck. I got Isaiah to try, nope. Nothing was getting through the line.
I called Amy in a panic who proceeded to get advice from her nursing friends who were all eager to provide examples of blood clots and all the worst case scenarios of what could go wrong. I then called the CF clinic (in retrospect, that should've been my first call) and the nurse said she couldn't bring me into clinic and they had nowhere on the floor for me to wait so I would have to go through the emergency department. Urghh.
Isaiah and I jumped in a cab for emerg. I've heard a lot of horror stories about the St. Mikes Emergency department being dirty and gross but it was actually not as bad as I had imagined. I mean the building is old and it's not laid out well. The waiting room isn't the most cheery place and it feels as though you're waiting in a hallway but the staff were all very friendly and efficient and the wait to see a nurse wasn't very long.
They took a chest xray to make sure that everything was where it is suppose to be and there was no clot at the end. Since the line goes to the heart, they like to be cautious when things go wrong. Which I appreciate. I would rather them not flush a blood clot into my heart because "it's probably fine."
The longest wait was for the IV nurse. No one else wanted to try the line and there seems to be only one IV nurse for the hospital. When she arrived, it flushed for her first try. Of course. Because that is how life works. I felt pretty silly for going but it's good it wasn't anything more serious. And it still works! I want to keep it in for as long as possible as I suspect my run of IV medication is far from being over.
I called Amy in a panic who proceeded to get advice from her nursing friends who were all eager to provide examples of blood clots and all the worst case scenarios of what could go wrong. I then called the CF clinic (in retrospect, that should've been my first call) and the nurse said she couldn't bring me into clinic and they had nowhere on the floor for me to wait so I would have to go through the emergency department. Urghh.
Isaiah and I jumped in a cab for emerg. I've heard a lot of horror stories about the St. Mikes Emergency department being dirty and gross but it was actually not as bad as I had imagined. I mean the building is old and it's not laid out well. The waiting room isn't the most cheery place and it feels as though you're waiting in a hallway but the staff were all very friendly and efficient and the wait to see a nurse wasn't very long.
They took a chest xray to make sure that everything was where it is suppose to be and there was no clot at the end. Since the line goes to the heart, they like to be cautious when things go wrong. Which I appreciate. I would rather them not flush a blood clot into my heart because "it's probably fine."
The longest wait was for the IV nurse. No one else wanted to try the line and there seems to be only one IV nurse for the hospital. When she arrived, it flushed for her first try. Of course. Because that is how life works. I felt pretty silly for going but it's good it wasn't anything more serious. And it still works! I want to keep it in for as long as possible as I suspect my run of IV medication is far from being over.
Saturday, 25 October 2014
Back at St. Mikes.
I've arrived in the hospital, I didn't have to go through the emergency department or admitting. It was really nice to just go straight to the floor and have them call down for a bracelet and to tell them I'm here. My day nurse was fantastic and I hope I have her again tomorrow and every day. She can never have a day off. The other nurses on this floor have all been very nice but this one was superb. She was prompt, had everything waiting in my room for me, knew all my meds, and was chatty but not in the weird 'let me tell you about my family, work drama, and everyone I've ever met with CF' kind of way. It was a very good way to start the visit.
I'm on one IV antibiotic twice a day which isn't bad. My sputum culture report isn't done yet so once the doctor eventually gets that, the medication will be tweaked accordingly but for now, she is happy with what I'm on. The nurse warned me about it causing serious nausea and for the first few hours I thought I might be okay. Then I went from feeling fine to wanting to curl up and/or vomit in the span of 15 minutes. They're going to give me an intense anti-nausea meds. Bring on the cancer drugs! (It's the anti-nausea that they give chemo patients. For some reason Amy and I refer to it as 'the cancer drug.' It neither cures nor gives me cancer.)
The doctor also told me that I am now officially on the status 2 'high priority' list as of yesterday afternoon. This was news to me as I though I've been on it since my last hospital visit and definitely I told everyone I was. Apparently that was all lies.
The CF doctor said after my clinic visit on Wednesday she emailed the transplant doctors at Toronto General to confirm my status only to be sent a response of "but she doesn't need to be status 2, she is doing so well at physio." The CF doctor thankfully responded with a "that is because is a determined person and not because her lungs are any good. Her lungs didn't respond well with the last round of antibiotics so believe me when I say she is more sick than she looks." They had rounds yesterday and decided to finally bumped me up.
I understand why stuff like this happens. I have too many doctors that it's easy for the less important stuff like status levels to be missed. With 3 different CF doctors at clinic, one of them can send away a email to 'confirm' something but then don't follow up or the message to follow up doesn't get passed to the next CF doctor on call. Also, I only see the transplant doctors every other month compared to my CF doctors which lately I've seen almost every week.
It seems as though the transplant doctors base their decision of 'high priority' more on how you function day-to-day and at physiotherapy over your lung function number. Someone could have a higher lung function than me (and most waiting probably do) but would require a wheelchair or have more physical limitations because it's effecting them different. Especially if that person has had a rapid decline. There is a huge difference between my declining from 70% to 19% over 10 years (I can't actually remember when I was at 70% but it was definitely over 10 years ago ), and someone declining from 90% to under 30% in a year.
The body adjusts remarkably well when change happens slowly. It's not so happy with sudden fluctuation. Much like a frog. So in that sense, it's sensible that they look at how people are physically functioning rather than bumping people up when they hit a pre-determined number. It makes logical sense, it's just frustrating when you're the one person with horrible lungs that can somehow still function relatively well.
The lesson I've learned for anyone reading this who is starting the lung transplant program, if your lungs are not responding to treatment but you aren't status 2, is to not try very hard at physio. Or make an effort but not during the walk tests. Or pretend to be more physically weak than you are and work out for real at a different gym. Or complain a lot to the physiotherapists. These are actually all horrible lessons. I would really like the transplant doctors to take my CF doctors more seriously.
I'm on one IV antibiotic twice a day which isn't bad. My sputum culture report isn't done yet so once the doctor eventually gets that, the medication will be tweaked accordingly but for now, she is happy with what I'm on. The nurse warned me about it causing serious nausea and for the first few hours I thought I might be okay. Then I went from feeling fine to wanting to curl up and/or vomit in the span of 15 minutes. They're going to give me an intense anti-nausea meds. Bring on the cancer drugs! (It's the anti-nausea that they give chemo patients. For some reason Amy and I refer to it as 'the cancer drug.' It neither cures nor gives me cancer.)
The doctor also told me that I am now officially on the status 2 'high priority' list as of yesterday afternoon. This was news to me as I though I've been on it since my last hospital visit and definitely I told everyone I was. Apparently that was all lies.
The CF doctor said after my clinic visit on Wednesday she emailed the transplant doctors at Toronto General to confirm my status only to be sent a response of "but she doesn't need to be status 2, she is doing so well at physio." The CF doctor thankfully responded with a "that is because is a determined person and not because her lungs are any good. Her lungs didn't respond well with the last round of antibiotics so believe me when I say she is more sick than she looks." They had rounds yesterday and decided to finally bumped me up.
I understand why stuff like this happens. I have too many doctors that it's easy for the less important stuff like status levels to be missed. With 3 different CF doctors at clinic, one of them can send away a email to 'confirm' something but then don't follow up or the message to follow up doesn't get passed to the next CF doctor on call. Also, I only see the transplant doctors every other month compared to my CF doctors which lately I've seen almost every week.
It seems as though the transplant doctors base their decision of 'high priority' more on how you function day-to-day and at physiotherapy over your lung function number. Someone could have a higher lung function than me (and most waiting probably do) but would require a wheelchair or have more physical limitations because it's effecting them different. Especially if that person has had a rapid decline. There is a huge difference between my declining from 70% to 19% over 10 years (I can't actually remember when I was at 70% but it was definitely over 10 years ago ), and someone declining from 90% to under 30% in a year.
The body adjusts remarkably well when change happens slowly. It's not so happy with sudden fluctuation. Much like a frog. So in that sense, it's sensible that they look at how people are physically functioning rather than bumping people up when they hit a pre-determined number. It makes logical sense, it's just frustrating when you're the one person with horrible lungs that can somehow still function relatively well.
The lesson I've learned for anyone reading this who is starting the lung transplant program, if your lungs are not responding to treatment but you aren't status 2, is to not try very hard at physio. Or make an effort but not during the walk tests. Or pretend to be more physically weak than you are and work out for real at a different gym. Or complain a lot to the physiotherapists. These are actually all horrible lessons. I would really like the transplant doctors to take my CF doctors more seriously.
Wednesday, 22 October 2014
The rollarcoast ride continues
Arghhhh!! The moment when I was starting to feel more energetic and my body was finally getting rid of the side effects from the antibiotics (nausea, bowel issues, etc...), I went to clinic today to discover that my lung function has dropped down to 19%, or FEV1 of .67. Surprise! Not exactly the news I was hoping for.
I knew that the bump from two weeks ago wouldn't last but I didn't think it would take two weeks to wear off. I was hoping to have at least a good 6-8 weeks as I'm still on one oral antibiotic (that is clearly doing shit-all). I was so excited to have finally responded to the medication but that was obviously a bit premature. I did not expect it to drop to the lowest I've ever been without me even noticing. How do I not feel that my lung function is down to 19%? This perplexes me so much.
I knew my lung function had declined some and wasn't awesome as I've been needing a bit more oxygen while walking around and feel short of breath more often, but I really didn't expect it to be as bad as when I had pneumonia. That time, I couldn't make it through the night without coughing, I could barely stand up straight for any period of time and couldn't make it through a shower without sitting down. I definitely feel better than that.
It's so weird to have your body crap out on you when you don't feel symptomatic. I wonder if this is how people with cancer feel when being told they have stage 4 even though they thought they were perfectly healthy in every way. Although for my hypothetical person with cancer, it would probably be way worse as they wouldn't be expecting it at all, at least it's not a complete shock to hear that my lungs are not doing well. The delcine always makes sense in hindsight (so that's why I've been feeling more short of breath when walking to the bus), but it's shocking at the time. I think that just speaks to how well the body can adjust and compensate loses.
After the doctor grimaced for awhile and said a lot of uplifting things such as "your lung function numbers are freaking me out", "I don't know what meds to give you anymore", and "we're stuck between a rock and a hard place," she came up with a plan of action, kind of. I was sent home for two days on some new oral antibiotics and then once my sputum culture report is completed, I'll be admitted to the hospital to start IV antibiotics based on whatever I'm currently growing.
The solution that sounds easy "you were on the one antibiotic and responded well, went off it and crashed, clearly you should go back on it," unfortunately doesn't work if I want to keep my kidney for any length of time (and I do). The side-effects of that medication are pretty strong and can destroy the body. The nausea, vomiting, and diarrhea I experienced are considered 'mild side effects.' They don't like to keep people on it for longer than a month at a time and my month is up.
They also want me to try a new antibiotic in my aerosol mask. However, since it can cause chest constriction, I have to wait to try it while I'm in the hospital as (quoting the doctor) I "don't have much lung function to work with if constricted too much." Again, comforting words from the doctor.
I could really use that transplant about now....every time I hit another bump, I think 'well, this must be it,' and so far it has never been 'it'. Maybe this time? I don't want to get my hopes up to high only to have the crushed once again.
I knew that the bump from two weeks ago wouldn't last but I didn't think it would take two weeks to wear off. I was hoping to have at least a good 6-8 weeks as I'm still on one oral antibiotic (that is clearly doing shit-all). I was so excited to have finally responded to the medication but that was obviously a bit premature. I did not expect it to drop to the lowest I've ever been without me even noticing. How do I not feel that my lung function is down to 19%? This perplexes me so much.
I knew my lung function had declined some and wasn't awesome as I've been needing a bit more oxygen while walking around and feel short of breath more often, but I really didn't expect it to be as bad as when I had pneumonia. That time, I couldn't make it through the night without coughing, I could barely stand up straight for any period of time and couldn't make it through a shower without sitting down. I definitely feel better than that.
It's so weird to have your body crap out on you when you don't feel symptomatic. I wonder if this is how people with cancer feel when being told they have stage 4 even though they thought they were perfectly healthy in every way. Although for my hypothetical person with cancer, it would probably be way worse as they wouldn't be expecting it at all, at least it's not a complete shock to hear that my lungs are not doing well. The delcine always makes sense in hindsight (so that's why I've been feeling more short of breath when walking to the bus), but it's shocking at the time. I think that just speaks to how well the body can adjust and compensate loses.
After the doctor grimaced for awhile and said a lot of uplifting things such as "your lung function numbers are freaking me out", "I don't know what meds to give you anymore", and "we're stuck between a rock and a hard place," she came up with a plan of action, kind of. I was sent home for two days on some new oral antibiotics and then once my sputum culture report is completed, I'll be admitted to the hospital to start IV antibiotics based on whatever I'm currently growing.
The solution that sounds easy "you were on the one antibiotic and responded well, went off it and crashed, clearly you should go back on it," unfortunately doesn't work if I want to keep my kidney for any length of time (and I do). The side-effects of that medication are pretty strong and can destroy the body. The nausea, vomiting, and diarrhea I experienced are considered 'mild side effects.' They don't like to keep people on it for longer than a month at a time and my month is up.
They also want me to try a new antibiotic in my aerosol mask. However, since it can cause chest constriction, I have to wait to try it while I'm in the hospital as (quoting the doctor) I "don't have much lung function to work with if constricted too much." Again, comforting words from the doctor.
I could really use that transplant about now....every time I hit another bump, I think 'well, this must be it,' and so far it has never been 'it'. Maybe this time? I don't want to get my hopes up to high only to have the crushed once again.
Thursday, 9 October 2014
The return of a missing person.
I discovered one good thing about my new time slot at physio, it means I see people who had mysteriously gone missing from my previously-regular time slot. If you remember back in August, around the time we had our family vacation, I mentioned that there was an older person at physio who was in quite poor health that I hadn't seen in several weeks.
They were always fairly consistent with attending physio at the same time as me, so I thought they wouldn't have changed times without a real reason. I hoped they had gotten their transplant and was hoping they had not gotten worse or died. However, when they never returned to physio during my time slot, I was pretty sure that they must have either gotten too ill to qualify for a transplant or had passed away.
Today, during my afternoon physio time, I saw the person again! They didn't die! They had their transplant and apparently moved to a different time slot for physiotherapy. It's amazing how a lung transplant transforms someones life. Post-transplant they were barely able to stand for any period of time without totally de-saturating. Now, they're walking on a treadmill for 20 minutes. I can only imagine how hard physio has been as their muscles that haven't been in use for so long start to rebuild and strengthen.
So hurray to good news stories, There can never be too many of those in the transplant world.
They were always fairly consistent with attending physio at the same time as me, so I thought they wouldn't have changed times without a real reason. I hoped they had gotten their transplant and was hoping they had not gotten worse or died. However, when they never returned to physio during my time slot, I was pretty sure that they must have either gotten too ill to qualify for a transplant or had passed away.
Today, during my afternoon physio time, I saw the person again! They didn't die! They had their transplant and apparently moved to a different time slot for physiotherapy. It's amazing how a lung transplant transforms someones life. Post-transplant they were barely able to stand for any period of time without totally de-saturating. Now, they're walking on a treadmill for 20 minutes. I can only imagine how hard physio has been as their muscles that haven't been in use for so long start to rebuild and strengthen.
So hurray to good news stories, There can never be too many of those in the transplant world.
Wednesday, 8 October 2014
Waiting Game: 1 year.
It's been one year. One year and silence. Sometimes I wonder if they've forgotten about me. I've had no false calls, or even a wrong number call on my pager. Yes, transplants are still happening, there have been 86 lung transplants so far this year in Ontario. Last year, there were 131 transplants so I would suspect that there will still be quite a few more in the next 3 months. When you consider that in 2004, there were 62 lung transplants, the fact that there were 131 last year is incredible. The science and technology has improved at an incredible rate.
There are currently 85 people waiting for a lung transplant, 28 of those are type A blood like myself. The stat that drives me crazy is what the Trillium Gift Life Network calls the 'conversion rate.' How it works is that every doctor and hospital in Ontario is legally required to notify the Trillium Network when they have a patient they consider a candidate for a transplant. The Trillium people get in touch with the family and the donation process continues from there.
The notification rate is in the 90% level for all hospitals in Ontario which is fantastic. However, when that is compared to the 'conversion rate', or the rate at which those people actually become organ donors, that's when it gets depressing. The conversion rate from April 1, 2013-March 31,2014 was 52% for Ontario. 52%!!!! That means that 48% of families didn't think that the organs of their dead loved one should be used to enhance another persons life. Because the worms needed the organs instead. Arghhh!!
(Yes, I realize that just because a doctor screens the person as eligible, they may not be after some furthur testing. But discounting those people, the conversion rate should still be higher than 52%.)
Less than 5% of people who die in an Ontario hospital are actually eligible to become organ donors. That means, despite most people's best intentions there is actually a very small change that you'll actually be eligible. Which is why even more important for the people who do qualify to actually donate. Can we please get an opt-out system now?
Alright, so I got a little side-tracked with my ranting...to recap the last month which was actually quite busy:
- I was hospitalised for 5 days. Usually I'm in for 2 week stints but because the IV meds weren't doing anything, they sent me home on really strong oral antibiotics and told me to get better at home. I am feeling better now.
The medication took a long time to kick in and I was getting quite panicked that they weren't working at all. However, it seems 3 weeks later, they have finally started to do something about my lungs. I'm still slightly panicked by how long that took. It's just another sign that my lungs are crap and I need a transplant (no surprise to anyone).
- Physio has decided that I need to be isolated while exercising. My new transplant coordinator apparently read my file for the first time this month and informed everyone that I needed to be isolated from all. The physiotherapists don't really know what to do with me so I've either been given a 8-830 slot (urg so early!!) or 230 (slightly better).
I now only go twice a week on Tues-Thurs and am separated from all by a barricade. It's kind of embarrassing when people try to cross the barricade and the physiotherapist tells them to 'stay away from that side of the room' while looking directly at me. Considering I use the same washrooms, elevators, and oxygen refilling station as everyone else, I feel like it's kind of pointless and more for the benefit of the some admin person than everyone else.
- Despite being in hospital and sick for most of the month, Isaiah and I still made it out to see a play, we had one final swim at my cousins pool, and I went to a few pottery classes. I decided too late that I should sign up for the fall pottery class session as I wasn't sure how long my hospital stay would last so by the time I got around to it, all the classes were sold out.
The instructor tried to get them to make an exception for me but the higher-ups refused. So I it's drop in classes for me for the next few months. I'm trying to take it as a sign from the universe that it means I'll get my transplant in the next two months so I wouldn't be able to attend the class anyway. Although considering I've found signs from the universe about my transplant for the past year and none of those have panned out, maybe the universe is just telling me that I need to not procrastinate with decision making.
- We also had some visitors last month, more arrive today, then one next week, and at the end of the month. When I talked to the psychologist yesterday he asked if I was missing home or my family. I replied that I honestly see my family more now than I did during most of university. It's been really nice as we go do all the touristy things when they're in town. Isaiah also went home for a few days last month which was great for him to both 1) get a break from here and 2) spend time with his family.
It's been a year with a lot of ups and downs. I was pretty bummed out (one might even say depressed) last month when I was discharged from the hospital about my lack of transplant and had pretty much lost all hope of a transplant. I'm feeling a bit better about it now. The psychologist yesterday told me I need to go easier on myself and that there is no magical way to force yourself to feel better. Sometimes you just need to be depressed for awhile in order to cope. I think hearing that made me feel better.
I know I have been fortunate enough to have spent all but 5 days of the last year out of the hospital and participating in activities I enjoy. This year has not been a year where my 'life has been on pause' or 'on hold' (what do people even mean when they say that? I'm still living even if I don't happen to be employed. Or work-centric society drives me crazy).
It's been a year where I learnt to focus on other aspects of my life. My plan on learning how to knit mittens didn't go very far but I have improved my art skills, explored Toronto, and, randomly, fell in love with pottery. I've also realised even more the importance of my friends and family. I've relied on them so much the past year, they're my amazing support system that I would be lost without. I could go on and on but this post is turning into a novella so I should probably stop. Also, my latte is getting cold.
There are currently 85 people waiting for a lung transplant, 28 of those are type A blood like myself. The stat that drives me crazy is what the Trillium Gift Life Network calls the 'conversion rate.' How it works is that every doctor and hospital in Ontario is legally required to notify the Trillium Network when they have a patient they consider a candidate for a transplant. The Trillium people get in touch with the family and the donation process continues from there.
The notification rate is in the 90% level for all hospitals in Ontario which is fantastic. However, when that is compared to the 'conversion rate', or the rate at which those people actually become organ donors, that's when it gets depressing. The conversion rate from April 1, 2013-March 31,2014 was 52% for Ontario. 52%!!!! That means that 48% of families didn't think that the organs of their dead loved one should be used to enhance another persons life. Because the worms needed the organs instead. Arghhh!!
(Yes, I realize that just because a doctor screens the person as eligible, they may not be after some furthur testing. But discounting those people, the conversion rate should still be higher than 52%.)
Less than 5% of people who die in an Ontario hospital are actually eligible to become organ donors. That means, despite most people's best intentions there is actually a very small change that you'll actually be eligible. Which is why even more important for the people who do qualify to actually donate. Can we please get an opt-out system now?
Alright, so I got a little side-tracked with my ranting...to recap the last month which was actually quite busy:
- I was hospitalised for 5 days. Usually I'm in for 2 week stints but because the IV meds weren't doing anything, they sent me home on really strong oral antibiotics and told me to get better at home. I am feeling better now.
The medication took a long time to kick in and I was getting quite panicked that they weren't working at all. However, it seems 3 weeks later, they have finally started to do something about my lungs. I'm still slightly panicked by how long that took. It's just another sign that my lungs are crap and I need a transplant (no surprise to anyone).
- Physio has decided that I need to be isolated while exercising. My new transplant coordinator apparently read my file for the first time this month and informed everyone that I needed to be isolated from all. The physiotherapists don't really know what to do with me so I've either been given a 8-830 slot (urg so early!!) or 230 (slightly better).
I now only go twice a week on Tues-Thurs and am separated from all by a barricade. It's kind of embarrassing when people try to cross the barricade and the physiotherapist tells them to 'stay away from that side of the room' while looking directly at me. Considering I use the same washrooms, elevators, and oxygen refilling station as everyone else, I feel like it's kind of pointless and more for the benefit of the some admin person than everyone else.
 |
| Don't cross the barricade! |
The instructor tried to get them to make an exception for me but the higher-ups refused. So I it's drop in classes for me for the next few months. I'm trying to take it as a sign from the universe that it means I'll get my transplant in the next two months so I wouldn't be able to attend the class anyway. Although considering I've found signs from the universe about my transplant for the past year and none of those have panned out, maybe the universe is just telling me that I need to not procrastinate with decision making.
- We also had some visitors last month, more arrive today, then one next week, and at the end of the month. When I talked to the psychologist yesterday he asked if I was missing home or my family. I replied that I honestly see my family more now than I did during most of university. It's been really nice as we go do all the touristy things when they're in town. Isaiah also went home for a few days last month which was great for him to both 1) get a break from here and 2) spend time with his family.
It's been a year with a lot of ups and downs. I was pretty bummed out (one might even say depressed) last month when I was discharged from the hospital about my lack of transplant and had pretty much lost all hope of a transplant. I'm feeling a bit better about it now. The psychologist yesterday told me I need to go easier on myself and that there is no magical way to force yourself to feel better. Sometimes you just need to be depressed for awhile in order to cope. I think hearing that made me feel better.
I know I have been fortunate enough to have spent all but 5 days of the last year out of the hospital and participating in activities I enjoy. This year has not been a year where my 'life has been on pause' or 'on hold' (what do people even mean when they say that? I'm still living even if I don't happen to be employed. Or work-centric society drives me crazy).
It's been a year where I learnt to focus on other aspects of my life. My plan on learning how to knit mittens didn't go very far but I have improved my art skills, explored Toronto, and, randomly, fell in love with pottery. I've also realised even more the importance of my friends and family. I've relied on them so much the past year, they're my amazing support system that I would be lost without. I could go on and on but this post is turning into a novella so I should probably stop. Also, my latte is getting cold.
Saturday, 27 September 2014
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!
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.
 |
- 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, 8 August 2014
Waiting Game: 10 Months.
10 months! Gahhh! I do these monthly summaries to keep it easy for the
occasionally readers of the blog but I feel like nothing of note happened last
month.
- Nothing has changed in physio. I show up, do my exercises, and leave. The only real changes are the people. I continue to be my introverted self and instead of talking to people, I have started imagining their life stories. I wonder what happened if they aren’t there one day or why they changed their times. It keeps me entertained. I’m not totally anti-social, I do say hello and small talk to the people who I see on a regular weekly, if not daily, basis. They are the people who have been there for as long as or longer than me. A few weeks ago, one woman told me that just before I arrived, she had told her mother that she hoped “that little girl wouldn’t be here today.” She quickly clarified that she meant she hoped I would be off getting my transplant and not that she didn’t want me there because I hog all the fans. I’m still here! Actually, they haven't been there for about two weeks, nor has the other person I mentioned August 1st who was quite ill, so maybe they’ve both had their transplants. The year end number is now up to 67 which means that 5 transplants happened in the last week (or they now just got around to updating their website)!
- The Fault in Our Stars movie has not normalized wearing oxygen as much as I hoped. I still get a lot of stares in public and a few days ago, a kid on the bus recently asked his guardian why I was wearing “that thing on my face.” I didn't hear the guardians response but he did look fairly embarrassed. Kids: embarrassing adults as soon as they learn to speak. But I think the kid has the right approach, I don't think I would mind if people asked me why I was wearing the oxygen. It would be better than the stare-not stare-stare technique that most adults seem to have embraced. I understand your curiosity people! Just ask me. Although to be honest, I never ask people about their lives either and also do the stare-not state-stare whenever anyone with an unusual characteristic gets on the bus/subway. We should all be more like the man on Tuesday, who, while I was waiting for the bus, walked by and told me that “he hoped I got better soon,” and walked away. It was a surprisingly nice gesture.
- Amy bought me beautiful earrings last month that she called my 9 month wait-iversary present. I have now fully embraced this new tradition of monthly gift giving by gifting myself some sushi for supper tonight. Happy 10 Months Me!
- The city weather has actually not been as bad as I thought it would be. Everyone is saying what an unusually cool summer it's been which is absolutely fantastic for me. By 'cool', they mean some days dip below 25. One day, I wore a sweater. Shocking, I know.
- And on a more depressing note, my lung function has returned to its pre-awesome-steroid-puffer state. Boo! I need stronger steroids! Although I can't deny that it did reduce my dry night cough so it is still somewhat useful I guess. I still haven't heard anything about whether or not I have a heart murmur so I'm hoping the 'no news is good news' adage is true.
That’s about it for what happened last month. I also went to pottery class in between our visitors, Isaiah played some board games with his board game group, and we discovered that it is vital to regularly vacuum the air vent for the air conditioning to work (a less exciting, but very important, event in our lives). We have visitors arriving soon for this month as well and already have some booked for Sept. Toronto is now the hot travel destination for the Watson and Jacques families. A continual thank you to everyone who sends me cards and well wishes while I wait. I know there are a lot of people who are helping me carry the wait-stress and I am incredibly grateful for all of you.
- Nothing has changed in physio. I show up, do my exercises, and leave. The only real changes are the people. I continue to be my introverted self and instead of talking to people, I have started imagining their life stories. I wonder what happened if they aren’t there one day or why they changed their times. It keeps me entertained. I’m not totally anti-social, I do say hello and small talk to the people who I see on a regular weekly, if not daily, basis. They are the people who have been there for as long as or longer than me. A few weeks ago, one woman told me that just before I arrived, she had told her mother that she hoped “that little girl wouldn’t be here today.” She quickly clarified that she meant she hoped I would be off getting my transplant and not that she didn’t want me there because I hog all the fans. I’m still here! Actually, they haven't been there for about two weeks, nor has the other person I mentioned August 1st who was quite ill, so maybe they’ve both had their transplants. The year end number is now up to 67 which means that 5 transplants happened in the last week (or they now just got around to updating their website)!
- The Fault in Our Stars movie has not normalized wearing oxygen as much as I hoped. I still get a lot of stares in public and a few days ago, a kid on the bus recently asked his guardian why I was wearing “that thing on my face.” I didn't hear the guardians response but he did look fairly embarrassed. Kids: embarrassing adults as soon as they learn to speak. But I think the kid has the right approach, I don't think I would mind if people asked me why I was wearing the oxygen. It would be better than the stare-not stare-stare technique that most adults seem to have embraced. I understand your curiosity people! Just ask me. Although to be honest, I never ask people about their lives either and also do the stare-not state-stare whenever anyone with an unusual characteristic gets on the bus/subway. We should all be more like the man on Tuesday, who, while I was waiting for the bus, walked by and told me that “he hoped I got better soon,” and walked away. It was a surprisingly nice gesture.
- Amy bought me beautiful earrings last month that she called my 9 month wait-iversary present. I have now fully embraced this new tradition of monthly gift giving by gifting myself some sushi for supper tonight. Happy 10 Months Me!
- The city weather has actually not been as bad as I thought it would be. Everyone is saying what an unusually cool summer it's been which is absolutely fantastic for me. By 'cool', they mean some days dip below 25. One day, I wore a sweater. Shocking, I know.
- And on a more depressing note, my lung function has returned to its pre-awesome-steroid-puffer state. Boo! I need stronger steroids! Although I can't deny that it did reduce my dry night cough so it is still somewhat useful I guess. I still haven't heard anything about whether or not I have a heart murmur so I'm hoping the 'no news is good news' adage is true.
That’s about it for what happened last month. I also went to pottery class in between our visitors, Isaiah played some board games with his board game group, and we discovered that it is vital to regularly vacuum the air vent for the air conditioning to work (a less exciting, but very important, event in our lives). We have visitors arriving soon for this month as well and already have some booked for Sept. Toronto is now the hot travel destination for the Watson and Jacques families. A continual thank you to everyone who sends me cards and well wishes while I wait. I know there are a lot of people who are helping me carry the wait-stress and I am incredibly grateful for all of you.
Tuesday, 5 August 2014
St. Mikes Apt
Well, the pulmicort bump has officially worn off. I returned to clinic today and my lung function was back down to 22% with a .77 or .79 outflow (I don't really remember). Booo! My coughing has increased a bit over the past few days, especially on any kind of exertion so I wonder if it's the start of an infection. Or maybe it was because I was tired, or maybe it was the weather. Surely there must be a reason other than it being that my lungs are on the decline. I can rationalize this away, right? Right.
I don't have any other real 'getting sick' symptoms other than the fact that a few times this past week, my sputum has been streaked with blood. Even though everyone tells me that it's common for people with lung disease, coughing up blood always sends me into a panic. Not as much since it's been happening with more frequency over the past year but it's still enough to bring on the 'I'm dying' tears.
I was told if I'm feeling worse to take the oral antibiotics that were prescribed to me in May. They are a potent cocktail of drugs so I hope I can just sleep away whatever is happening as the drugs are as bad as the infection. I had a two hour nap this afternoon as part of my new 'sleep my way to better health' initiative.
I don't have any other real 'getting sick' symptoms other than the fact that a few times this past week, my sputum has been streaked with blood. Even though everyone tells me that it's common for people with lung disease, coughing up blood always sends me into a panic. Not as much since it's been happening with more frequency over the past year but it's still enough to bring on the 'I'm dying' tears.
I was told if I'm feeling worse to take the oral antibiotics that were prescribed to me in May. They are a potent cocktail of drugs so I hope I can just sleep away whatever is happening as the drugs are as bad as the infection. I had a two hour nap this afternoon as part of my new 'sleep my way to better health' initiative.
Tuesday, 22 July 2014
St. Mikes appointment
I had a doctor appointment today and while it wasn't all gold stars and high fives, it could have been worse.
My lung function awesomeness of 28% from 2 months ago has not maintained and has returned to my apparent baseline of 24 or 26% (in my disappointment, I didn't remember what the doctor said but it was either 24 or 26%). St. Mikes CF team seems to be more focused on the actual FEV1 number rather than the percentage so if you prefer that, I've dropped from an output in the first second from .9something liters to .8something liters which is still higher than pre-magical-puffer of .77 liters.
The drop wasn't enough for the doctor to want to do anything about it as I'm feeling fine energy-wise and my cough is about baseline (although it's so hard to tell). While it is disappointing, I'm not shocked by the news. I felt my 28% was too good to be true or to be maintained more than a month. While a part of me is hoping that my results were lower today because I was more tired or something, my realistic part thinks it's probably just my lungs getting off the initial steroid high and becoming more accustomed to the medication. It won't be long before I start asking for the better steroids.
In other news, I've lost a few pounds which I don't feel is a huge deal seeing as overall I've gained about 10lb since being here but dietitians always seems to panic whenever there is any decline. I promised to eat more chips and less veggies, even though it's super hard with all the fresh fruit now in season. I just want to eat bowls of fresh strawberries and raspberries. Probably why I lost the pounds in the first place. More whipped cream for me!
I asked about the results from my echo to see if I really do have a heart murmur but of course they had no idea and couldn't get ahold of anyone from the Toronto General to find out. The doctor reassured me that someone would be looking over the results but seeing as how every appointment the doctor reads my chart and looks up the tests for the first time while sitting in front of me, I have my doubts. Apparently someone will call if there was a problem or more likely, I'll find out during my next transplant clinic.
My last exciting piece of news (the excitement bar is set pretty low for dr apts) is that I met my new transplant coordinator. The old one who I saw on listing day to sign papers, handed me a binder, and have never seen again, turns out she has retired and I now have a new person to never see. Although maybe since this person is new and young, she'll be more excited about her job and check in once in awhile.
My lung function awesomeness of 28% from 2 months ago has not maintained and has returned to my apparent baseline of 24 or 26% (in my disappointment, I didn't remember what the doctor said but it was either 24 or 26%). St. Mikes CF team seems to be more focused on the actual FEV1 number rather than the percentage so if you prefer that, I've dropped from an output in the first second from .9something liters to .8something liters which is still higher than pre-magical-puffer of .77 liters.
The drop wasn't enough for the doctor to want to do anything about it as I'm feeling fine energy-wise and my cough is about baseline (although it's so hard to tell). While it is disappointing, I'm not shocked by the news. I felt my 28% was too good to be true or to be maintained more than a month. While a part of me is hoping that my results were lower today because I was more tired or something, my realistic part thinks it's probably just my lungs getting off the initial steroid high and becoming more accustomed to the medication. It won't be long before I start asking for the better steroids.
In other news, I've lost a few pounds which I don't feel is a huge deal seeing as overall I've gained about 10lb since being here but dietitians always seems to panic whenever there is any decline. I promised to eat more chips and less veggies, even though it's super hard with all the fresh fruit now in season. I just want to eat bowls of fresh strawberries and raspberries. Probably why I lost the pounds in the first place. More whipped cream for me!
I asked about the results from my echo to see if I really do have a heart murmur but of course they had no idea and couldn't get ahold of anyone from the Toronto General to find out. The doctor reassured me that someone would be looking over the results but seeing as how every appointment the doctor reads my chart and looks up the tests for the first time while sitting in front of me, I have my doubts. Apparently someone will call if there was a problem or more likely, I'll find out during my next transplant clinic.
My last exciting piece of news (the excitement bar is set pretty low for dr apts) is that I met my new transplant coordinator. The old one who I saw on listing day to sign papers, handed me a binder, and have never seen again, turns out she has retired and I now have a new person to never see. Although maybe since this person is new and young, she'll be more excited about her job and check in once in awhile.
Tuesday, 8 July 2014
Waiting Game: 9 months
9 months! Wow. I honestly didn't think I would be waiting this long. Although, since my whole 'why don't I have a transplant yettttt' pity party, I've reached some acceptance about my long wait. I figure that if anyone has to have a long wait, it might as well be me. I'm still enjoying Toronto and getting out to do things so if it's me versus someone who is hospitalized, I'm in a better place to have a long wait. Not that I have a real choice about my wait, but my new philosophy is helping somewhat.
So a quick update on the past month, there isn't too much but let's start as usual with physio.
- Physio remains the same, by this point I've seen people get listed, wait, have their transplant, and be discharged. Just a clarification from my last month update, the leg weights that I showed, are used just for leg lifts. I don't wear them while on the treadmill or anything (I was asked about that so I thought I should clarify. My legs are definitely not that strong).
My physio routine consists of: 20 minutes treadmill, 15 minutes stationary bike, stretches, arm and leg weights. I took a friend last month to physio and she said she pictured it being more gym-like. So I took a picture so everyone can get a sense of where I go three times a week. It's very much a large room with exercise equipment. The picture below is just one side of the space although the other side looks pretty much the same. I just didn't think the people on the treadmills would enjoy having their picture taken.
- I may or may not have a heart murmur. Something came up on my last Echocardiogram that had never shown up before so the doctor didn't really believe the results. However, I'm having it re-tested this week to double check. It wouldn't surprise me if I have developed a murmur as my heart works incredibly hard to compensate for my crap lungs. My heart rate is always super high in general and it goes even higher while I'm exercising. If I do have a murmur, the doctor said it isn't anything to panic about, it's just something that the surgeon will need to be aware of during the transplant.
- We had a lot of visitors this past month which was really nice. I've posted pictures of most of our activities in past posts. I think we've managed to see all the big Toronto tourist attractions which is nice. We even managed to fit in a visit to my cousins for Canada Day where I learned that fireworks are only legal on holidays in Ontario.
The limitation on fireworks means that people really love setting them off on the few days they are allowed. It sounded like everyone in the subdivision was having their own firework show. I don't ever remember people in NB or NS ever being that excited about setting off their own fireworks. Or maybe I just hung out with the wrong people. The upside to all the noise was that their neighbour provided us with a very nice firework display without us having to leave the backyard.
So a quick update on the past month, there isn't too much but let's start as usual with physio.
- Physio remains the same, by this point I've seen people get listed, wait, have their transplant, and be discharged. Just a clarification from my last month update, the leg weights that I showed, are used just for leg lifts. I don't wear them while on the treadmill or anything (I was asked about that so I thought I should clarify. My legs are definitely not that strong).
My physio routine consists of: 20 minutes treadmill, 15 minutes stationary bike, stretches, arm and leg weights. I took a friend last month to physio and she said she pictured it being more gym-like. So I took a picture so everyone can get a sense of where I go three times a week. It's very much a large room with exercise equipment. The picture below is just one side of the space although the other side looks pretty much the same. I just didn't think the people on the treadmills would enjoy having their picture taken.
 |
| Notice the two fans facing the left treadmill? That's from me being a fan-hog due to the exorbitant temperatures of the room. |
- We had a lot of visitors this past month which was really nice. I've posted pictures of most of our activities in past posts. I think we've managed to see all the big Toronto tourist attractions which is nice. We even managed to fit in a visit to my cousins for Canada Day where I learned that fireworks are only legal on holidays in Ontario.
The limitation on fireworks means that people really love setting them off on the few days they are allowed. It sounded like everyone in the subdivision was having their own firework show. I don't ever remember people in NB or NS ever being that excited about setting off their own fireworks. Or maybe I just hung out with the wrong people. The upside to all the noise was that their neighbour provided us with a very nice firework display without us having to leave the backyard.
 |
| How I spent most of Canada Day. Waiting for a transplant doesn't have to be all bad. |
Sunday, 6 July 2014
Cellular Memory
I spent my evening doing Internet research on cellular memory after Amy texted me about a book she was reading that involved a woman receiving a heart transplant, only to start getting flashes of the donors life. Then it turned out the donor was murdered and now the woman has to solve the mystery before she herself becomes the target. Dun dun dun....oh the drama!
Amy texted to inform me that if I started getting flashes of a murder post-transplant and had to solve the crime, that I shouldn't go looking for the murder myself. Thank you for the concern big sister. It's all very dramatic and sounds perfect for a fiction novel, but I started looking online and there is actually a name for the phenomena (the recieving memory from an organ part, it doesn't have to involve murder).
It's called cellular memory and the theory is that memories are not just made in the brain but that they can be made in other organs. Therefore, when those organs are transplanted, the 'memory' of that organ gets transplanted to that person. That person can then undergoes a personality change or diet chance because of experiences 'remembered' from the initial organ.
While the medical community doesn't support any of the personal claims of individual, there are news articles about this apparent phenomena documenting cases of this effect. The problem is that after reading more than two news stories 'reporting cases', I realized they are all repeating variants of the same three stories:
1) A woman who received the heart from an 18-year-old male who died in a motorcycle accident, reported having a craving for beer and chicken nuggets after the surgery. The heart transplant recipient also began to have reoccurring dreams about a man named 'Tim L.' Upon searching the obituaries, the woman found out her donor's name was Tim and that he loved all of the food that she craved.
2) An eight-year-old girl received the heart of a murdered ten-year-old and began having terrifying dreams about a man murdering her donor. Until then, the murderer had not been caught, but recollections from the girl's dream were so precise that police were able to track down the killer and he was convicted. (This is the one that everyone loves to share and is exactly like the book Amy was reading. Perhaps the author read the same news article)
3) Sonny Graham received the heart of Terry Cottle who had shot himself in the head. After the transplant in 1995 Mr Graham met Mr Cottle's widow Cheryl, falling in love and marrying her (I find that weirdest thing, apparently donor confidentiality wasn't a thing in 1995). Twelve years later, Mr Graham shot himself, leaving Cheryl a widow for the second time grieving for husbands who had shared a heart.
However interesting those stories may be, I don't think that three unverified stories on the Internet means that a phenomena is real. Some reports says there have been '70 cases' of this cellular memory effect but when you match that up against the number of transplants happening every year, 70 examples is not very many.
My Internet research did not come up with any scientific studies, it seems that any attempt to study the phenomenon (I found this on Wikipedia so not the best source) has been more about teaching worms or mice a trick and then feeding that animal to another worm or mouse and seeing if they can perform the same trick. They could not. It isn't quite the same as a organ transplant but it is interesting.
Personally, I side with the medical community (skeptic.com had some actual information) and think most of the changes post-transplant can be attributed to stress of major surgery, side effects from medication, or sheer coincidence. Major surgery is stressful, as is the stress of imminent death so it shouldn't be surprising if peoples personalities change post-transplant.
I think that it's also normal for people to want to feel a connection to their donor and if the anti-rejection meds happen to make someone crave more sweets, I can understand how that could easily be attributed to developing a personality trait of the donor. However, it's just a side-effect of the prednisone. I doubt it would pass a double-blind randomized control study.
So while I think cellular memory is an interesting theory and a fun idea for a murder mystery, when it comes to my list of transplant concerns, getting memories from the donor and having to solve their murder is not one of them.
Amy texted to inform me that if I started getting flashes of a murder post-transplant and had to solve the crime, that I shouldn't go looking for the murder myself. Thank you for the concern big sister. It's all very dramatic and sounds perfect for a fiction novel, but I started looking online and there is actually a name for the phenomena (the recieving memory from an organ part, it doesn't have to involve murder).
It's called cellular memory and the theory is that memories are not just made in the brain but that they can be made in other organs. Therefore, when those organs are transplanted, the 'memory' of that organ gets transplanted to that person. That person can then undergoes a personality change or diet chance because of experiences 'remembered' from the initial organ.
While the medical community doesn't support any of the personal claims of individual, there are news articles about this apparent phenomena documenting cases of this effect. The problem is that after reading more than two news stories 'reporting cases', I realized they are all repeating variants of the same three stories:
1) A woman who received the heart from an 18-year-old male who died in a motorcycle accident, reported having a craving for beer and chicken nuggets after the surgery. The heart transplant recipient also began to have reoccurring dreams about a man named 'Tim L.' Upon searching the obituaries, the woman found out her donor's name was Tim and that he loved all of the food that she craved.
2) An eight-year-old girl received the heart of a murdered ten-year-old and began having terrifying dreams about a man murdering her donor. Until then, the murderer had not been caught, but recollections from the girl's dream were so precise that police were able to track down the killer and he was convicted. (This is the one that everyone loves to share and is exactly like the book Amy was reading. Perhaps the author read the same news article)
3) Sonny Graham received the heart of Terry Cottle who had shot himself in the head. After the transplant in 1995 Mr Graham met Mr Cottle's widow Cheryl, falling in love and marrying her (I find that weirdest thing, apparently donor confidentiality wasn't a thing in 1995). Twelve years later, Mr Graham shot himself, leaving Cheryl a widow for the second time grieving for husbands who had shared a heart.
However interesting those stories may be, I don't think that three unverified stories on the Internet means that a phenomena is real. Some reports says there have been '70 cases' of this cellular memory effect but when you match that up against the number of transplants happening every year, 70 examples is not very many.
My Internet research did not come up with any scientific studies, it seems that any attempt to study the phenomenon (I found this on Wikipedia so not the best source) has been more about teaching worms or mice a trick and then feeding that animal to another worm or mouse and seeing if they can perform the same trick. They could not. It isn't quite the same as a organ transplant but it is interesting.
Personally, I side with the medical community (skeptic.com had some actual information) and think most of the changes post-transplant can be attributed to stress of major surgery, side effects from medication, or sheer coincidence. Major surgery is stressful, as is the stress of imminent death so it shouldn't be surprising if peoples personalities change post-transplant.
I think that it's also normal for people to want to feel a connection to their donor and if the anti-rejection meds happen to make someone crave more sweets, I can understand how that could easily be attributed to developing a personality trait of the donor. However, it's just a side-effect of the prednisone. I doubt it would pass a double-blind randomized control study.
So while I think cellular memory is an interesting theory and a fun idea for a murder mystery, when it comes to my list of transplant concerns, getting memories from the donor and having to solve their murder is not one of them.
Thursday, 3 July 2014
Where is my transplant....
Well, as you can tell, June has passed and all is still quiet on the transplant-front. To be honest, I'm discouraged and am getting somewhat disheartened. For some reason, I really thought that June was going to be my month.
I'm not really sure why I thought it would be June, it just seemed like it would be the perfect month. I would have been recovered by the time the hot summer heat/humidity arrived, so I could really enjoy the summer. Plus, if I had the transplant last month, my three month recovery would have ended just as the apartment lease ended. As well, not to be insensitive, but I thought that there would be an increase of drinking and driving accidents by teenagers at graduation parties which would mean more donors that are closer to my body size. Obviously, we can all agree that it's good that teenagers are not getting into fatal accidents around graduation.
The lack of transplant in June means that the timeline I had imagined when I moved to Toronto is gone. I hadn't really anticipated getting a transplant before May but I thought that I would at least have one by the end of June. I was so good with the waiting bit when I didn't think the surgery was going to happen. However, now that June has come and gone, my waiting anxiety has increased. I feel as thought I should create a new hypothetical timeline but I wouldn't even know which month I would guess at this point. I should start taking bets on it, 6/1 odds on August anyone?
Just for everyones information, according to the Trillium Gift of Life Network, as of July 3rd, in Ontario, there are 84 people waiting for a lung transplant and there have been 51 lung transplants so far this year. At least transplants are happening!
I'm not really sure why I thought it would be June, it just seemed like it would be the perfect month. I would have been recovered by the time the hot summer heat/humidity arrived, so I could really enjoy the summer. Plus, if I had the transplant last month, my three month recovery would have ended just as the apartment lease ended. As well, not to be insensitive, but I thought that there would be an increase of drinking and driving accidents by teenagers at graduation parties which would mean more donors that are closer to my body size. Obviously, we can all agree that it's good that teenagers are not getting into fatal accidents around graduation.
The lack of transplant in June means that the timeline I had imagined when I moved to Toronto is gone. I hadn't really anticipated getting a transplant before May but I thought that I would at least have one by the end of June. I was so good with the waiting bit when I didn't think the surgery was going to happen. However, now that June has come and gone, my waiting anxiety has increased. I feel as thought I should create a new hypothetical timeline but I wouldn't even know which month I would guess at this point. I should start taking bets on it, 6/1 odds on August anyone?
Just for everyones information, according to the Trillium Gift of Life Network, as of July 3rd, in Ontario, there are 84 people waiting for a lung transplant and there have been 51 lung transplants so far this year. At least transplants are happening!
Thursday, 19 June 2014
Oxygen.
Since my lung function has gone up and my oxygen levels have improved slightly, I thought after my doctor appointment that would mean I could start wearing my oxygen a bit less like I was before my levels started dropping. I still wore the oxygen almost all the time but would leave it home if I was going to a play or out to eat. I was hoping that I could get away with not wearing it while I was being inactive to give my very dry nose a bit of a break.
However, it turns out that my lungs have grown accustomed to the oxygen and lately I feel more short of breath when I'm not wearing the oxygen even if my levels are staying above 90. I don't always feel an immediate effect but I definitely do if I'm walking around or it is slightly humid outside.
I realize that before when I wasn't wearing the oxygen, I was probably still as short of breath but I was so use to it that I didn't notice. Stupid lungs and their getting accustomed to not being stressed all the time. My nose was hoping for a break!
However, it turns out that my lungs have grown accustomed to the oxygen and lately I feel more short of breath when I'm not wearing the oxygen even if my levels are staying above 90. I don't always feel an immediate effect but I definitely do if I'm walking around or it is slightly humid outside.
I realize that before when I wasn't wearing the oxygen, I was probably still as short of breath but I was so use to it that I didn't notice. Stupid lungs and their getting accustomed to not being stressed all the time. My nose was hoping for a break!
Thursday, 12 June 2014
Walking Test
I finally did my walking test yesterday, and I've improved from March. Yay! My distance was up from 530m to 585m. I don't really know what that means compared to an average person (I can't find that study online) but I'm just happy it improved. My oxygen levels didn't crash out quite as bad either although they still crashed pretty far. I listened to some pumping music so maybe that helped although most likely it's the new puffer and higher oxygen flow.
The woman who did her test before me, was doing all her pre-transplant testing and was significantly lower than she had been a few weeks ago. So they were making her return in a hour to repeat the test. That poor woman! I found it hard to do my regular physio stuff after the walk test, I can't imagine having to do two in the span of an hour. Her legs must be aching today.
The woman who did her test before me, was doing all her pre-transplant testing and was significantly lower than she had been a few weeks ago. So they were making her return in a hour to repeat the test. That poor woman! I found it hard to do my regular physio stuff after the walk test, I can't imagine having to do two in the span of an hour. Her legs must be aching today.
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