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.
Thursday, 30 October 2014
Wednesday, 29 October 2014
Discharged
I've been discharged. They really don't like to keep me very long there. My lung function has improved a bit and since I'm not symptomatic and my sputum cultures aren't showing that I'm growing anything besides the normal respiratory bugs, the doctor said she had no real argument to keep me in hospital. I'm home on oral antibiotics.
The last three days have been pretty miserable. The IV antibiotic kicked in full gear on Monday and I spent most of the time trying not to throw up. They pumped me full of anti-nausea meds so I felt a bit better yesterday afternoon/evening (the timing worked out as my visiting friend and I had opera tickets!). This morning however, it all returned.
Stupid toxic medication. Hopefully it doesn't take long to leave my system so I can go back to eating solid foods again. I have a new admiration for people going through chemo. The tempting to quit the treatment must be overwhelming when it makes you feel so much worse than the actual cancer. I was ready to call it quits after five days.
The last three days have been pretty miserable. The IV antibiotic kicked in full gear on Monday and I spent most of the time trying not to throw up. They pumped me full of anti-nausea meds so I felt a bit better yesterday afternoon/evening (the timing worked out as my visiting friend and I had opera tickets!). This morning however, it all returned.
Stupid toxic medication. Hopefully it doesn't take long to leave my system so I can go back to eating solid foods again. I have a new admiration for people going through chemo. The tempting to quit the treatment must be overwhelming when it makes you feel so much worse than the actual cancer. I was ready to call it quits after five days.
Sunday, 26 October 2014
Hospital update but not really.
Things are going well here in hospital-land. I can't get over how much better the quality of care is in this wing compared to the Halifax Infirmary. The nurses have all been very friendly, the food isn't bad (as far as mass produced food goes, plus they give me lots of chips!), and it's quiet. Almost unbelieveably quiet.
I went out on pass this afternoon and when I returned at suppertime, I was astonished at how little noise there was. I had thought it was quiet because my room is at the end of the hall but it was quiet the entire way. No patients were yelling, no loud TVs, no loud family running around, nothing. It is almost a place where someone could rest peacefully.
I honestly think a big difference is that everyone on the floor is an RN. Not to take away from LPNs or CCAs as they have a role in certain wings, but the fact that there is just one person responsible for all the care means they don't have that expectation that someone else is going to do all the little tasks like change the bedding or organise showers schedules.
It means that unlike Halifax, when you ask them to help you with a task, they help you with that task instead of delegating it to a third party. And instead of having a LPN check your vitals and a RN visiting to unhock the IV, and a CCA visiting to change the bedding, it all gets done in one visit. It means I feel more comfortable napping during the morning knowing that I'm not going to be disturbed all the time. It is such a different atmosphere compared to Halifax where the RNs only dispense medication and the LPNs or CCAs do everything else.
I'm not meaning to make the Halifax nurses sound lazy, they aren't, they work hard as their jobs are getting squeezed every year. It may be that their scope of practice doesn't even have them do the non-medical tasks anymore and that it's all been delegated to someone on a lower paygrade. However, whether intentional or not, that means that there are more people responsible for one patient which sounds like it should be better but instead it seems to cause confusion and instead of everything getting done, sometimes nothing would get done as everyone expected the other person to do it (ie. linen changing).
The other huge difference is that it is a dedicated respirology wing so all of the nurses know about the medication I'm taking and have all had many many patients with CF. No one wakes me up early to tell me to eat my breakfast or take my medication. They know to leave me alone unless it's important or I buzz them. Honestly, for a hospital stay, I have almost no complaints. When I compare it to Amys horrible experience at the Moncton Hospital, it's like I'm staying at a fancy hotel (if only the beds were bigger!). Halifax really needs to push for a respirology wing as I'm going to have high demands when I return to NS.
I went out on pass this afternoon and when I returned at suppertime, I was astonished at how little noise there was. I had thought it was quiet because my room is at the end of the hall but it was quiet the entire way. No patients were yelling, no loud TVs, no loud family running around, nothing. It is almost a place where someone could rest peacefully.
I honestly think a big difference is that everyone on the floor is an RN. Not to take away from LPNs or CCAs as they have a role in certain wings, but the fact that there is just one person responsible for all the care means they don't have that expectation that someone else is going to do all the little tasks like change the bedding or organise showers schedules.
It means that unlike Halifax, when you ask them to help you with a task, they help you with that task instead of delegating it to a third party. And instead of having a LPN check your vitals and a RN visiting to unhock the IV, and a CCA visiting to change the bedding, it all gets done in one visit. It means I feel more comfortable napping during the morning knowing that I'm not going to be disturbed all the time. It is such a different atmosphere compared to Halifax where the RNs only dispense medication and the LPNs or CCAs do everything else.
I'm not meaning to make the Halifax nurses sound lazy, they aren't, they work hard as their jobs are getting squeezed every year. It may be that their scope of practice doesn't even have them do the non-medical tasks anymore and that it's all been delegated to someone on a lower paygrade. However, whether intentional or not, that means that there are more people responsible for one patient which sounds like it should be better but instead it seems to cause confusion and instead of everything getting done, sometimes nothing would get done as everyone expected the other person to do it (ie. linen changing).
The other huge difference is that it is a dedicated respirology wing so all of the nurses know about the medication I'm taking and have all had many many patients with CF. No one wakes me up early to tell me to eat my breakfast or take my medication. They know to leave me alone unless it's important or I buzz them. Honestly, for a hospital stay, I have almost no complaints. When I compare it to Amys horrible experience at the Moncton Hospital, it's like I'm staying at a fancy hotel (if only the beds were bigger!). Halifax really needs to push for a respirology wing as I'm going to have high demands when I return to NS.
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.
Thursday, 23 October 2014
The brain and the body
It's amazing how fast it took after finding out that my lung function has dropped to me feeling super tired and unwell in general. It's as though as soon as my body realized my lungs were crapping out, it just stopped trying.
I realize it is mostly psychological as one rarely goes from feeling ambitious and energetic in the morning, to having a killer headache and exhausted for the next two days. I mean, sure it happens, but seeing as it started to happen immediately after my clinic appointment, it's fairly clear that the appointment zapped all the energy out of me. I didn't even make it to pottery class last night.
However, just because my lack of energy yesterday and today is mostly psychological, doesn't make it any easier. There is now added anxiety of going to the hospital and if I'll have to go through the emergency department. I hope once I actually get into a room at the hospital, I'll feel a bit better. And perhaps, I truly am tired from my lack of sleeping-in this week and would have crashed out yesterday either way. I will never know.
It would be interesting to study the effects of being told your health is either improving or declining and see how you feel the next day. I would bet there is a good correlation between people believing that they're sick and immediately feeling ill. I would imagine it's been done at some point (a brief search turned up nothing for me) even though it would be really hard to get past a ethics committee. I can't imagine they would look kindly on researchers telling a bunch of healthy participants they had cancer just to study how ill the participants made themselves. Universities try to stay away from research that will get them sued.
I realize it is mostly psychological as one rarely goes from feeling ambitious and energetic in the morning, to having a killer headache and exhausted for the next two days. I mean, sure it happens, but seeing as it started to happen immediately after my clinic appointment, it's fairly clear that the appointment zapped all the energy out of me. I didn't even make it to pottery class last night.
However, just because my lack of energy yesterday and today is mostly psychological, doesn't make it any easier. There is now added anxiety of going to the hospital and if I'll have to go through the emergency department. I hope once I actually get into a room at the hospital, I'll feel a bit better. And perhaps, I truly am tired from my lack of sleeping-in this week and would have crashed out yesterday either way. I will never know.
It would be interesting to study the effects of being told your health is either improving or declining and see how you feel the next day. I would bet there is a good correlation between people believing that they're sick and immediately feeling ill. I would imagine it's been done at some point (a brief search turned up nothing for me) even though it would be really hard to get past a ethics committee. I can't imagine they would look kindly on researchers telling a bunch of healthy participants they had cancer just to study how ill the participants made themselves. Universities try to stay away from research that will get them sued.
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.
Monday, 20 October 2014
Stormy Skies painting
I made this landscape scene the other day when I wasn't feeling overly upbeat. I thought that I could paint the blues away. It seemed to work a bit as I definitely felt better afterward. I think my emotions definitly came through in my colour choices. I used the watercolour pencils, I'm definitely getting better at blending them to make different shades and effects.
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Saturday, 18 October 2014
Halloween cards!
I spent yesterday listening to podcasts and making some Halloween cards. I think festive cards need to extend to other holidays and not just around December. Everyone loves getting cards!
This years theme is apparently is orange and bats. Although to be fair, that is probably the theme of most Halloween cards. The bats extended to the envelopes as well. While not as spooky as last year's ones, they still scream Halloween. I honestly really like bats, I think they're kind of adorable and they eat all our mosquitoes. We should really be doing more to save them from that white nose syndrome that's wiping them all out. What else do we have that can eat half its body weight in insects every day? I don't think pigeons are going to be volunteering any time soon as they chow down on our garbage and french fries.
This years theme is apparently is orange and bats. Although to be fair, that is probably the theme of most Halloween cards. The bats extended to the envelopes as well. While not as spooky as last year's ones, they still scream Halloween. I honestly really like bats, I think they're kind of adorable and they eat all our mosquitoes. We should really be doing more to save them from that white nose syndrome that's wiping them all out. What else do we have that can eat half its body weight in insects every day? I don't think pigeons are going to be volunteering any time soon as they chow down on our garbage and french fries.
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| They're Spooktacular! And yes, I made that joke all day about everything. |
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| Bat envelopes potraying how bats drink nectar from a flower. I guess slightly less informative when each person only gets one card each. |
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| Look how cute he is with his face full of pollen. He looks like he's about to sneeze. |
Friday, 17 October 2014
Pottery continues
I've been good about going to the pottery drop in the last two weeks. The TARDIS teapot has been glazed and sent back into the kiln. It took me the entire two hours on Wednesday to glaze it. I always feel as though I have so much time at the beginning but then end up madly rushing at the end. I'm still not sure if I did the spout correctly. I tried to pour some glaze through it to make sure that it will be sealed for when it's used for water but now I'm worried that I put too thick of a glaze in and it will seal itself off. If that happens, I'll need to somehow chisel it down so it'll actually pour.
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| Dalek mug I made last week! None of the circle things fell off! |
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| The layers on the cover didn't stay stuck together for some weird reason. Maybe I didn't use enough of the glue stuff or not enough pressure? Whatever the error, it all came apart so I was told that using glaze to adhere them together would also work but it won't be completely smooth. The teapot already has the 'flying through space' look so I don't think a little more unevenness will make a difference. |
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| The bottom glaze looks purple here. It should be a denim blue! Fingers crossed it turns out right. |
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| The little window detail took me forever. I have so many ideas now how I would do the next one differently. Maybe by my third one, I'll have it right. |
Thursday, 16 October 2014
Organ Banking
I recently heard a podcast from CBC's Ideas and they were podcasting some of the highlights from the "Ideacity Conference," a three-day conference in Toronto.
One of the speakers talked about her new business which is trying to become the first organ banking company. In the same way that blood and tissue are able to be readily available when needed (providing people keep donating), they hope to have a system available so people would have access to organs when needed. As many organs are currently discarded, due to the lack of nearby available recipients, being able to save the organs would mean that the surgeries wouldn't have to happen in the short time frame that current practice.
The problems they've had in the past with the idea of long-term organ storing has been not knowing how to freeze the organs fast enough that there is no ice formation which destroys the tissue. Also, the liquids that they do use to freeze the organs are quite toxic so they are unable to be used even if they've been properly frozen. And of course, the rewarming process on the other side. There are a lot of problems with long-term storing.
But it seems as though this company has been able to solve most of the problems. Through methods that I didn't fully understand, it seems as though they've managed to quickly freeze the organs with a non-toxic material. And because it freezes from the inside out, there is less stress on the organ itself. They then flush the organs with helium and store them in liquid nitrogen, the same material that companies use to freeze embryos.
The organ banking company feels as though they will be able to store organs for an indefinite amount of time. They also think that by doing this, they could eliminate 5 of the transplant waiting lists within a year in the US. A year!
The long-term storage would also be better for the person receiving the transplant. If they could keep them for a week, the surgeries could be scheduled as non-emergency procedures so people could be in better health. If they could keep them for 6 months, the merging stem cell therapies could be used in conjunction with their frozen organs. The stem cell process would involve taking some of the donor cells and injecting small amounts into the body as a way of preforming an immune adjustment on the body before the actual transplant. They hope this will eliminate transplant rejection as the body has more time to prepare for a new organ.
The organ banking company still has to work out the rewarming part of the organs but the speaker was very confident that was no problem and that everything should be ready for market in 5-7 years. That seems like a very short period of time considering they're still asking for investors. I'm highly skeptical that it will be sweeping the nation in 10 years but I love the idea of the technology. Imagine how magical it would be!
In the Q&A session at the end, the speaker said that she feels eventually the organ transplant process as we know it is going to end as the self-engineered organs (building organs with the person's own cells) process will take over. But her freezing system will still be important as instead of freezing other peoples organs, we'll all have our own self-made frozen organs ready to go in her coolers.
I find this all super fascinating. Without taking anything away from how far organ transplant technology has progressed, I keep wanting technology to jump ahead 10 years so I can 3D print my own lungs from my cells. I could do it all in my living room! I realize that I'm probably not alone in the world in thinking that that the technology that will save them is just out of their reach and if only they could jump ahead 10-15 years. Imagine those people who were dying of infections in 1935 hearing of this magical discovery 'penicillin' that was going to change everything.If only they could have jumped ahead to 1945 when they were starting to mass produce it. The next thing is always just out of reach.
Of course, none of this fancy new technology will work if the super micro bugs take over and antibiotics become obsolete (thanks to the overuse of the aforementioned penicillin). Then it's good bye to all transplants. So maybe jumping ahead 10 years isn't such a good idea after all...
One of the speakers talked about her new business which is trying to become the first organ banking company. In the same way that blood and tissue are able to be readily available when needed (providing people keep donating), they hope to have a system available so people would have access to organs when needed. As many organs are currently discarded, due to the lack of nearby available recipients, being able to save the organs would mean that the surgeries wouldn't have to happen in the short time frame that current practice.
The problems they've had in the past with the idea of long-term organ storing has been not knowing how to freeze the organs fast enough that there is no ice formation which destroys the tissue. Also, the liquids that they do use to freeze the organs are quite toxic so they are unable to be used even if they've been properly frozen. And of course, the rewarming process on the other side. There are a lot of problems with long-term storing.
But it seems as though this company has been able to solve most of the problems. Through methods that I didn't fully understand, it seems as though they've managed to quickly freeze the organs with a non-toxic material. And because it freezes from the inside out, there is less stress on the organ itself. They then flush the organs with helium and store them in liquid nitrogen, the same material that companies use to freeze embryos.
The organ banking company feels as though they will be able to store organs for an indefinite amount of time. They also think that by doing this, they could eliminate 5 of the transplant waiting lists within a year in the US. A year!
The long-term storage would also be better for the person receiving the transplant. If they could keep them for a week, the surgeries could be scheduled as non-emergency procedures so people could be in better health. If they could keep them for 6 months, the merging stem cell therapies could be used in conjunction with their frozen organs. The stem cell process would involve taking some of the donor cells and injecting small amounts into the body as a way of preforming an immune adjustment on the body before the actual transplant. They hope this will eliminate transplant rejection as the body has more time to prepare for a new organ.
The organ banking company still has to work out the rewarming part of the organs but the speaker was very confident that was no problem and that everything should be ready for market in 5-7 years. That seems like a very short period of time considering they're still asking for investors. I'm highly skeptical that it will be sweeping the nation in 10 years but I love the idea of the technology. Imagine how magical it would be!
In the Q&A session at the end, the speaker said that she feels eventually the organ transplant process as we know it is going to end as the self-engineered organs (building organs with the person's own cells) process will take over. But her freezing system will still be important as instead of freezing other peoples organs, we'll all have our own self-made frozen organs ready to go in her coolers.
I find this all super fascinating. Without taking anything away from how far organ transplant technology has progressed, I keep wanting technology to jump ahead 10 years so I can 3D print my own lungs from my cells. I could do it all in my living room! I realize that I'm probably not alone in the world in thinking that that the technology that will save them is just out of their reach and if only they could jump ahead 10-15 years. Imagine those people who were dying of infections in 1935 hearing of this magical discovery 'penicillin' that was going to change everything.If only they could have jumped ahead to 1945 when they were starting to mass produce it. The next thing is always just out of reach.
Of course, none of this fancy new technology will work if the super micro bugs take over and antibiotics become obsolete (thanks to the overuse of the aforementioned penicillin). Then it's good bye to all transplants. So maybe jumping ahead 10 years isn't such a good idea after all...
Tuesday, 14 October 2014
Happy Thanksgiving!
I hope everyone had a happy Thanksgiving! Unlike last year, I wasn't homesick as Mom and Dad were here to visit for the weekend. It didn't seem like we were that busy but clearly I was too busy to be blogging. They flew home yesterday early morning and then Isaiah and I had our third large Thanksgiving meal of the weekend at my cousins. I was pretty exhausted by the end of the day.
So, I was somewhat-less-than-my-pleasant self this morning when I had to drag myself to get to physio by 830. I was also quite unmotivated to do anything once I arrived. I basically went through the motions, did the bare minimum, and made it back home to have a nap as quickly as I could. My mantra of "I'm there anyway, I may as well make an effort" apparently doesn't apply when I have to get up at 6 am.
Some pictures from the weekend:
So, I was somewhat-less-than-my-pleasant self this morning when I had to drag myself to get to physio by 830. I was also quite unmotivated to do anything once I arrived. I basically went through the motions, did the bare minimum, and made it back home to have a nap as quickly as I could. My mantra of "I'm there anyway, I may as well make an effort" apparently doesn't apply when I have to get up at 6 am.
Some pictures from the weekend:
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| Pretty flowers Mom gave me. |
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| We went out for yummy crepes. |
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| Went to a taping of the Mercer Report. |
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| Played some board games. |
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| Walked through the Toronto Botanical Gardens. |
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| Anyone know what type of grassy plant this is? If so, Mom would like to know. |
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.
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| 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.
Tuesday, 7 October 2014
Psych
I talked to the psychologist today at my clinic appointment. It went well, it probably helped that I had just been told that my lung function had improved up to a fev of .77 so I was in a really good mood. The drugs are finally working!!
I basically just told him all my woes about feeling unmotivated and hopeless since being admitted to the hospital. He had a student with him who went into my entire life history. I'm not sure if that was a student thing or if every psychology visit starts off that way. How does one normally respond when asked 'how was your childhood?' or 'how was high school?' I have never really reflected on it to be honest. It was good I guess? As awkward as everyone else? Did they want a play by play of each year?
Although, he just repeated what everyone else has been telling me that "I'm under a lot of stress and waiting is hard so it's normal to have days or weeks where I don't feel like myself," it was still nice to talk to someone who is a bit removed from the situation.
I feel reassured to be told by someone outside my friends and family, that all things considered, I'm coping fairly well and to keep doing activities I enjoy and relying on my support systems. He didn't recommend medication as my unmotivation hasn't been stopping me from attending my appointments. Also, the depressed feelings have been slowly dissipating over the past week so hopefully things are on the upswing emotionally.
He did recommend I try a 'Mindful Way Workbook' that explains and walks through the steps to mindful meditation. I remember talking about that in a few of my recreation therapy classes and whenever we tried it, I mostly just felt sleepy. I put the book on hold at the library so we'll see if it has some techniques that will be helpful that don't put me to sleep.
I basically just told him all my woes about feeling unmotivated and hopeless since being admitted to the hospital. He had a student with him who went into my entire life history. I'm not sure if that was a student thing or if every psychology visit starts off that way. How does one normally respond when asked 'how was your childhood?' or 'how was high school?' I have never really reflected on it to be honest. It was good I guess? As awkward as everyone else? Did they want a play by play of each year?
Although, he just repeated what everyone else has been telling me that "I'm under a lot of stress and waiting is hard so it's normal to have days or weeks where I don't feel like myself," it was still nice to talk to someone who is a bit removed from the situation.
I feel reassured to be told by someone outside my friends and family, that all things considered, I'm coping fairly well and to keep doing activities I enjoy and relying on my support systems. He didn't recommend medication as my unmotivation hasn't been stopping me from attending my appointments. Also, the depressed feelings have been slowly dissipating over the past week so hopefully things are on the upswing emotionally.
He did recommend I try a 'Mindful Way Workbook' that explains and walks through the steps to mindful meditation. I remember talking about that in a few of my recreation therapy classes and whenever we tried it, I mostly just felt sleepy. I put the book on hold at the library so we'll see if it has some techniques that will be helpful that don't put me to sleep.
Monday, 6 October 2014
Rooster painting
It seems like my new physio days are now Tuesday and Thursday afternoons. Except I have to go to the dreaded 8am slot tomorrow as lately it seems like I spend every Tuesday afternoon hanging out at St. Micheals.
So in lieu of exercising today, I dusted off my "Chinese brush painting kit" and painted a rooster. I think he turned out pretty well and is now guarding the fridge from intruders.
So in lieu of exercising today, I dusted off my "Chinese brush painting kit" and painted a rooster. I think he turned out pretty well and is now guarding the fridge from intruders.
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Sunday, 5 October 2014
Fall road trip!
Isaiah and I went for a Autumn drive yesterday to Alton, had a lovely fancy lunch at the Millcroft Inn and then continued our drive through Orangeville and the Hockley Valley. It was nice to be out of the city to see the fall leaves. We were suggested the outing by someone who use to live in the area and played around the mill as a child before it was converted into a fancy Inn and Spa.
The Forks of the Credit roadway to Alton was gorgeous. There was a river and colourful trees, it reminded me of a drive in NB we would sometimes take in the fall with my grandmother to see the leaves. It was slightly mountainous (for Ontario) and the road had a few switchbacks which were fun to zoom around with the standard. Apparently Elton John has a place in the area but we were not invited in for tea on his estate. Next time perhaps.
We used the trip as a bit of a 'one year in Toronto' celebration. We made it through one year surviving in Toronto, waiting for the transplant. One year of physio, hospital visits, and ignoring people on the subway. On the bright side, it was also one year of theatre visits, sporting events, and festivals. So I guess it balances out in the end. Somewhat.
The Forks of the Credit roadway to Alton was gorgeous. There was a river and colourful trees, it reminded me of a drive in NB we would sometimes take in the fall with my grandmother to see the leaves. It was slightly mountainous (for Ontario) and the road had a few switchbacks which were fun to zoom around with the standard. Apparently Elton John has a place in the area but we were not invited in for tea on his estate. Next time perhaps.
We used the trip as a bit of a 'one year in Toronto' celebration. We made it through one year surviving in Toronto, waiting for the transplant. One year of physio, hospital visits, and ignoring people on the subway. On the bright side, it was also one year of theatre visits, sporting events, and festivals. So I guess it balances out in the end. Somewhat.
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| The beautiful drive! |
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| Our view at the lovely inn. |
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| The other side. |
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| Isaiah's prosciutto wrapped rabbit legs with foraged wild mushroom risotto. |
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| My delicious bison burger topped with blue cheese and quail egg. Yum!! |
Friday, 3 October 2014
Pottery drop-in class.
I went to a pottery drop in class today. It felt so good to be playing with clay again. I honestly think attending pottery classes has kept me mentally healthy, or relatively so. I have been feeling better this past week. I think with everything that's been happening, I honestly haven't had time to sit and feel super bummed out. I'm still going to see the psychologist on Tuesday though.
I wasn't sure if I should sign up for the fall pottery session as I wonder if I'm going to hit a pottery overload. Then I was hospitalized and I wanted to wait until that was all straightened out. So by the time I went to sign up last week, all but two of the classes were sold out. The only options left are a figurine class that doesn't really interest me or intermediate wheel throwing which says you should be able to comfortably centre the clay and make cylindrical shapes, both of which I'm not really able to do consistently. I figured that basically made the decision for me and maybe I would go to a few drop in classes instead.
However, at pottery class tonight, the instructor said that she would let me in her class, providing the enrolment people approve (and they should, it's more money for them). She said since I've been there before and 'know what I'm doing', it would be fine. I know what I'm doing apparently! The class would be better for me as I would actually attend. The problem with drop in classes is that I always say I'm going to go and then come up with a million excuses the day of as to why I should stay home instead. Whereas if I've already paid, I'm going even if I'm tired.
Tonight I worked on what I hope will be Isaiah's Christmas present so NO telling!! And no, he never reads my blog. It might turn into a teapot if I'm feeling super ambitious or it might just be a small container to sit on a shelf. Two hours goes by really quickly.
I also got my pieces back from the drop in class I did when David and Cindy were here. One piece looks amazing and the red bacon plate from before still looks pretty weird. I'm at a loss as to what to do with it, my next plan is to glaze it black and hope that covers the mess. David and Cindy's stuff turned out great though, they just have to return to glaze it. An excuse to visit!
I wasn't sure if I should sign up for the fall pottery session as I wonder if I'm going to hit a pottery overload. Then I was hospitalized and I wanted to wait until that was all straightened out. So by the time I went to sign up last week, all but two of the classes were sold out. The only options left are a figurine class that doesn't really interest me or intermediate wheel throwing which says you should be able to comfortably centre the clay and make cylindrical shapes, both of which I'm not really able to do consistently. I figured that basically made the decision for me and maybe I would go to a few drop in classes instead.
However, at pottery class tonight, the instructor said that she would let me in her class, providing the enrolment people approve (and they should, it's more money for them). She said since I've been there before and 'know what I'm doing', it would be fine. I know what I'm doing apparently! The class would be better for me as I would actually attend. The problem with drop in classes is that I always say I'm going to go and then come up with a million excuses the day of as to why I should stay home instead. Whereas if I've already paid, I'm going even if I'm tired.
Tonight I worked on what I hope will be Isaiah's Christmas present so NO telling!! And no, he never reads my blog. It might turn into a teapot if I'm feeling super ambitious or it might just be a small container to sit on a shelf. Two hours goes by really quickly.
I also got my pieces back from the drop in class I did when David and Cindy were here. One piece looks amazing and the red bacon plate from before still looks pretty weird. I'm at a loss as to what to do with it, my next plan is to glaze it black and hope that covers the mess. David and Cindy's stuff turned out great though, they just have to return to glaze it. An excuse to visit!
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| Second glazing of my weaved piece. I love it and will have a hard time giving this away for Christmas as previously planned. |
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| David and Cindy's creations! They were pretty busy in the 2 hours. |
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| Cindy also made a beautiful bowl that I'm keeping unless she returns to claim it. |
Thursday, 2 October 2014
Isolated from all!
I've kind of recovered from the horrible news on Tuesday. Mostly because I haven't had time to think about it furthur. While still at the clinic appointment on Tuesday, physio called to inform me that they had just heard from my new transplant coordinator that I required isolation while exercising. Apparently no one had read my file or they somehow didn't realise that I grew certain bugs. Now that they know, apparently I'm suppose to exercise in isolation.
I found out more on Wednesday when I went in for 8am (urgh!!) where I was the only one in the physio room. They don't have an actual isolation room so they kicked me out at 9am even though I hadn't completed everything. I told them it would not work as a long-term solution and they had to come up with a better plan. So far their better plan is for me to stay home Friday while 'they come up with a better plan.' They seemed as confused as me as to why I suddenly need isolated after a year.
The entire thing seems silly to me seeing as how clean the physio room is, everyone is so paranoid in wiping stuff down. Also considering after leaving physio, I'll be using the same elevator, bathrooms, and doors as everyone else. It's infection control for namesake only. I think they just want to be able to say that they are doing something to avoid germs spreading.
If I do end up in some weird isolation time or room, I think I'll miss seeing other people at physio. I know I don't really talk to anyone but I still get some comfort in seeing the same people every week and seeing them progress or get a transplant. It's so nice to see someone go from pre to post-transplant and I'll miss all that if I'm being shunned from everyone.
I guess the one plus to all this stuff happening the last few days is that I haven't had time to feel depressed. I've been too busy between doctor appointments, dentist appointments, on the phone with physio, and napping. Now I just need to wait to hear from physio about a plan that doesn't involve me rising before sunrise. My body needs sleep, people!
I found out more on Wednesday when I went in for 8am (urgh!!) where I was the only one in the physio room. They don't have an actual isolation room so they kicked me out at 9am even though I hadn't completed everything. I told them it would not work as a long-term solution and they had to come up with a better plan. So far their better plan is for me to stay home Friday while 'they come up with a better plan.' They seemed as confused as me as to why I suddenly need isolated after a year.
The entire thing seems silly to me seeing as how clean the physio room is, everyone is so paranoid in wiping stuff down. Also considering after leaving physio, I'll be using the same elevator, bathrooms, and doors as everyone else. It's infection control for namesake only. I think they just want to be able to say that they are doing something to avoid germs spreading.
If I do end up in some weird isolation time or room, I think I'll miss seeing other people at physio. I know I don't really talk to anyone but I still get some comfort in seeing the same people every week and seeing them progress or get a transplant. It's so nice to see someone go from pre to post-transplant and I'll miss all that if I'm being shunned from everyone.
I guess the one plus to all this stuff happening the last few days is that I haven't had time to feel depressed. I've been too busy between doctor appointments, dentist appointments, on the phone with physio, and napping. Now I just need to wait to hear from physio about a plan that doesn't involve me rising before sunrise. My body needs sleep, people!
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