I had a satisfying clinic yesterday. So satisfying, in fact, that I was there until 6:15 (just kidding---I wasn't there so long for THAT reason.. *grumble*) and not home until 8.
But seriously, I do love when clinic provides me with a new way of looking at things, a new hope for my health, or anything beyond the monotonous repeating of symptoms and drugs.
Yesterday I went in knowing I wanted some antibiotics. I don't feel sick, but I have had more shortness of breath, and thicker sputum and its been 4 months since I was on any antibiotics. It's time.
The cool thing was, apparently I grew pseudomonas for the first time since July 2008 last clinic. I like to think that its the reason for my symptoms. I also think its really cool that I didn't grow it for basically 2 years after my one and only month-long admission. You gotta celebrate the little things.
So anyways I'm on cipro now and we'll see how that goes. My pfts were stable (though "stable" at my since-summer-low of .83 litres and 27%) and my weight was up, so I'm not even sure what I can reasonably expect, but I love the hope.
The final thing I wanted to mention, was this clinic's transplant talk from Dr.T. I spoke with a different doctor last clinic, so it was great to have both of their speeches under my belt. Dr.T echoed what Dr.S felt about me needing to be assessed for safety/insurance reasons especially. I didn't need much convincing. The month I requested to "swallow" this information has helped tons for myself and my family and I was ready for my referral to go through.
Dr.T rambled on about tx, and happened to bring up a woman (I swear I didn't lead her here at ALL) who has gone against advice and became pregnant after transplant...twice. She has done fine so far and Dr.T brought up how much people like that tweak professional perspective and sometimes make what was deemed accurate warning to be a little "harsh" (her word). I used this opportunity to ask her if she thought I would be able to do egg retrieval post transplant, something I've been thinking about. In her opinion, it poses no problem, which warmed my heart with hope. I got thinking about the pregnant woman. I would never make that kind of choice for myself, but I realized that because of how new transplant really is for CF, how grateful I am to people who want to take such risks. They are why we learn. I got thinking about another risk-taking tx'er.. who is currently dating a pre-tx Cf patient I know. I find their situation mind-boggling.. but again, the opportunity for learning is there. I love it and I thank them.
Wednesday, February 17, 2010
Tuesday, February 9, 2010
This is my week-before-clinic face
I know.. Exercise is important all the time.. but with the help of upcoming clinic, unpurchased new wii batteries, and some American Idol on tv, its been much easier to do the more-exhausting exercise bike lately. And I'll take it.
Friday, January 29, 2010
Why my dog was worth $600
THINGS BAUER DOES THAT MAKE ME LAUGH TILL I COUGH (or just cough):
1.) When he was a puppy and didn't understand percussion and hopped up on my lap and pawed at my chest and my husbands percussing hands till it looked like he was trying to give me physio himself
2.) When he wants food/a waterbottle/an out of reach toy/attention/to go outside and he barks in all different tones until it starts to sound like talking or weird pathetic garble
3.)When he randomly decides while I'm laying on my side for physio that I'm his female mate (need I say more?)
4)When he meets the oxygen delivery guy for the first time and instantly ADORES him more than any other new person and licks him to death while the guy tries to explain the sheets I have to sign
5)When we're in the park eating lunch on the grass with him off-leash and of all places he picks RIGHT BESIDE ME to take a big dump
6)When I'm not laughing, but gagging while picking up something gross he has left--I still cough tons!
7)showering him when he makes me fight to the extent that I take a shower as well
and soooo much more. So thanks Bauer for being the cherry on my physio-sundae :) and my company while daddy is at work!
Monday, January 25, 2010
Role reversal
So the oxygen-at-home thing is a couple weeks old now. I've been all over the map with it. Indifferent, contemplative, upset, angry, scared, etc etc etc. . I didn't expect so much out of something I requested myself (and for exercise alone). Regardless, I wear it when I do my wii fit or my exercise bike. I wore it once walking my dog in the park, and once speed-walking in the mall. I find I feel different about it depending on who I'm with, not so much how many strangers I'm around. With my mom and sister I don't really care about wearing it, I feel safe and strong and like I'm doing good for myself. With my husband its a bit different. I feel like a burden, and like I don't want to be seen publicly with him and with O2 because it makes his life appear less 'normal' at 27 years old... He, on the other hand, doesn't seem to mind at all. He is the one who encourages me to bring it everywhere and anywhere we have to walk. I'm a lucky girl is all I know. I've just got to work on my own perspective.
This oxygen thing has got me thinking overly about transplant too. I worry a little more, and everything relates in my mind to 'what if I'm listed at that time..' whenever I'm thinking about any kind of distant plans. You would think this would have been plaguing me for longer than this, and I guess it was but it's emphasized now. It will never be easy to make the transition to 'waiting for a transplant' but I'm grateful to get some sort of acceptance over with mentally. I guess its just how I like to do things, in steps.
Finally, my grandmother has been having some heart problems as of late especially. Tonight I went to visit her in the hospital. Its been a really long time since I visited anyone else in the hospital. I had been avoiding it her last few admissions (for obvious reasons) but felt it was time to show my support, carefully. There was something extremely powerful about being the visitor instead of the visitee. Its like I needed that for myself. Maybe because of the recent implications that things are on a downturn for me, or maybe just because it made me feel like I could do something a little more helpful and important with my time while Mike's at work. It was a win-win for Gramma and me, and I hope (but doubt) she felt as refreshed and positive as I did after our visit.
This oxygen thing has got me thinking overly about transplant too. I worry a little more, and everything relates in my mind to 'what if I'm listed at that time..' whenever I'm thinking about any kind of distant plans. You would think this would have been plaguing me for longer than this, and I guess it was but it's emphasized now. It will never be easy to make the transition to 'waiting for a transplant' but I'm grateful to get some sort of acceptance over with mentally. I guess its just how I like to do things, in steps.
Finally, my grandmother has been having some heart problems as of late especially. Tonight I went to visit her in the hospital. Its been a really long time since I visited anyone else in the hospital. I had been avoiding it her last few admissions (for obvious reasons) but felt it was time to show my support, carefully. There was something extremely powerful about being the visitor instead of the visitee. Its like I needed that for myself. Maybe because of the recent implications that things are on a downturn for me, or maybe just because it made me feel like I could do something a little more helpful and important with my time while Mike's at work. It was a win-win for Gramma and me, and I hope (but doubt) she felt as refreshed and positive as I did after our visit.
Wednesday, January 13, 2010
Odds and Sods
I feel like I've had a busy couple of days emotionally. Nothing too extreme, really.. just feels it.
Yesterday I had clinic. I've been working a bit more consistently at my wii fit for a week or two, taken the time to drink a few more ensures, and it showed. Up a % in lung function (which still is 2 or 3 % away from where I feel comfortable) and up a pound in weight. Yay me.
I had a plan to ask about getting home oxygen. We might be flying somewhere on vacation in the next couple months so the absolute only way I am willing to do that, is with O2, since on our honeymoon my usually-generous oximeter said I de-satted to 85 on the plane. yikes. Well, as it turns out, I COULD have used the bloodgas I received during my admission to qualify me for home O2 so long as it was within a month of getting it done. I asked someone back then, and they said that ABG's taken when you are on iv antibiotics are invalid because they are not representative of the baseline value for a patient. Apparently, however, that person must have actually meant that if you are uncharacteristically sicker during an admission, its not a good idea.
ANYWAYS, so I swore (the staff in the pft lab encouraged me to) and sucked it up and requested yet another bloodgas to be taken. I got a different person this time and WOW.. I thought last time was good.. I didn't even feel the needle go in! I sat there holding my moms hand and shaking while waiting for it and as I sat I felt the characteristic chu-chug of my blood at my wrist. At that moment, E asked 'are you alright?' and I said 'yes, just hate waiting through how long this takes' and she said 'oh, well I'm just waiting for your blood to flow out enough, but I'm in there'. I was shocked. I felt nothing other than the creepy chugging thing. Actually I find clotting it up afterwards feels worse than any other part. Its icky imagining letting go of the dressing and seeing blood squirt a metre across the room. At least thats what I picture based on how it feels.
After all of that, well... technically before all of that... my nurse did her usual thing, but started with 'have you been assessed for transplant?' which I've been getting alot lately from the nurses. It frustrates me because shouldn't it be written somewhere? And why ask me so much now all of a sudden? So, I got assertive and asked the doc. She mentioned the obvious fact of my lung function (though its been relatively stable for 4 years as she later pointed out) and the conversation led all the way to her saying that she thought it was time to at least book a referral to the transplant hospital. I didn't really know how to take it. I knew all of this was nearing, but it baffles me how it had to be me asking to make her say so much. I worry for my family and how this will make them feel. My mom was there with me and she took it really well, but I told the doc that I didn't want her to send the referral right that minute, because I needed time to let us all absorb this much. She fought me, but when I reminded her that if I hadn't have brought it up she wouldnt' have suggested it, she gave in. I will allow her to book the initial meeting with the tx hospital in a months time when I next have clinic, and I think I'm goign to aim for spring for the 4-day assessment.
I've been assured that more than likely, I will not be considered ready to be on the 'active' list just yet, and that I should think of getting assessed as 'insurance'. Good, because that's all I'm ready for, but I think its healthy to get moving on this.
Yesterday I had clinic. I've been working a bit more consistently at my wii fit for a week or two, taken the time to drink a few more ensures, and it showed. Up a % in lung function (which still is 2 or 3 % away from where I feel comfortable) and up a pound in weight. Yay me.
I had a plan to ask about getting home oxygen. We might be flying somewhere on vacation in the next couple months so the absolute only way I am willing to do that, is with O2, since on our honeymoon my usually-generous oximeter said I de-satted to 85 on the plane. yikes. Well, as it turns out, I COULD have used the bloodgas I received during my admission to qualify me for home O2 so long as it was within a month of getting it done. I asked someone back then, and they said that ABG's taken when you are on iv antibiotics are invalid because they are not representative of the baseline value for a patient. Apparently, however, that person must have actually meant that if you are uncharacteristically sicker during an admission, its not a good idea.
ANYWAYS, so I swore (the staff in the pft lab encouraged me to) and sucked it up and requested yet another bloodgas to be taken. I got a different person this time and WOW.. I thought last time was good.. I didn't even feel the needle go in! I sat there holding my moms hand and shaking while waiting for it and as I sat I felt the characteristic chu-chug of my blood at my wrist. At that moment, E asked 'are you alright?' and I said 'yes, just hate waiting through how long this takes' and she said 'oh, well I'm just waiting for your blood to flow out enough, but I'm in there'. I was shocked. I felt nothing other than the creepy chugging thing. Actually I find clotting it up afterwards feels worse than any other part. Its icky imagining letting go of the dressing and seeing blood squirt a metre across the room. At least thats what I picture based on how it feels.
After all of that, well... technically before all of that... my nurse did her usual thing, but started with 'have you been assessed for transplant?' which I've been getting alot lately from the nurses. It frustrates me because shouldn't it be written somewhere? And why ask me so much now all of a sudden? So, I got assertive and asked the doc. She mentioned the obvious fact of my lung function (though its been relatively stable for 4 years as she later pointed out) and the conversation led all the way to her saying that she thought it was time to at least book a referral to the transplant hospital. I didn't really know how to take it. I knew all of this was nearing, but it baffles me how it had to be me asking to make her say so much. I worry for my family and how this will make them feel. My mom was there with me and she took it really well, but I told the doc that I didn't want her to send the referral right that minute, because I needed time to let us all absorb this much. She fought me, but when I reminded her that if I hadn't have brought it up she wouldnt' have suggested it, she gave in. I will allow her to book the initial meeting with the tx hospital in a months time when I next have clinic, and I think I'm goign to aim for spring for the 4-day assessment.
I've been assured that more than likely, I will not be considered ready to be on the 'active' list just yet, and that I should think of getting assessed as 'insurance'. Good, because that's all I'm ready for, but I think its healthy to get moving on this.
Thursday, January 7, 2010
How exercise has been going....
This more or less represents how my health routine has been going overall....
December wasn't so impressive... and I'm ashamed. For some reason my "Mii" is checking out her butt in December.. lol... Thats' all for now.
Tuesday, January 5, 2010
2010- The New Decade
Welcome.
Just a quick one to welcome in 2010 and its eternal snow *thumbs down*
New Decades are just a little more fascinating than new years and I was drawn to thinking about the potential this one holds and the scary truths that hang in the air. It's so bad.. but I couldn't help think about how this is the decade where I reach my life expectancy.. what a strange feeling. At the beginning of the last one I thought nothing like this. I was 17 with lung function in the high 70's, low 80's.. where I'd coasted all my life. I had no knowledge of admissions or friends with CF, or LOSING friends to CF. My mind was stuck on frustration at being single, worry at being painfully shy and heading off to a university full of new people (well, technically one year later), balancing part time work and school... nothing else. SO much can change in 10 years. I love who I am today versus who I was then. I can imagine growing so so much more in another ten years to a point that would be exciting to feel. I love the changes that come from experiences.. I'm just so terrified of the ones that will come from CF. Regardless, I don't regret thinking about this all the time. I truly think its worrying about it that keeps me on top of things.. I love seeing all the CF groups on facebook with names like "CF isnt going to win!" and various versions of that. I wish I had the lung function to feel hope and that being a part of those communities could potentially save me from transplant. Regardless, its nice to feel surrounded by people knowing what I'm going through at this point in my life, and I will continue to fight and hope for something unbelievable to happen so that I can soon feel like blowing past 2019 with ease is within reach!
Just a quick one to welcome in 2010 and its eternal snow *thumbs down*
New Decades are just a little more fascinating than new years and I was drawn to thinking about the potential this one holds and the scary truths that hang in the air. It's so bad.. but I couldn't help think about how this is the decade where I reach my life expectancy.. what a strange feeling. At the beginning of the last one I thought nothing like this. I was 17 with lung function in the high 70's, low 80's.. where I'd coasted all my life. I had no knowledge of admissions or friends with CF, or LOSING friends to CF. My mind was stuck on frustration at being single, worry at being painfully shy and heading off to a university full of new people (well, technically one year later), balancing part time work and school... nothing else. SO much can change in 10 years. I love who I am today versus who I was then. I can imagine growing so so much more in another ten years to a point that would be exciting to feel. I love the changes that come from experiences.. I'm just so terrified of the ones that will come from CF. Regardless, I don't regret thinking about this all the time. I truly think its worrying about it that keeps me on top of things.. I love seeing all the CF groups on facebook with names like "CF isnt going to win!" and various versions of that. I wish I had the lung function to feel hope and that being a part of those communities could potentially save me from transplant. Regardless, its nice to feel surrounded by people knowing what I'm going through at this point in my life, and I will continue to fight and hope for something unbelievable to happen so that I can soon feel like blowing past 2019 with ease is within reach!
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