In March, I got the flu. April 1st, I went to the ER at Stanford and ended up in the ICU, fighting to live. I have been listed for lungs and am at the top of the list for my size and blood type.
So basically we're now in a holding pattern, waiting for that perfect set of lungs. Waiting for that call. Waiting, waiting, waiting. I'm feeling better today, first day that I feel really in control of myself for a few weeks. The plan is to just keep me here, in the hospital, until the call. Taking a lot of walks, eating all I can, drinking supplements, and getting as strong as possible so I can have as much as possible to get through the surgery. IV antibiotics will end in the next two days or so, as the infections are about as clear as they'll ever get... not much more that can be done on that front since my lungs are so shot to hell.
But they keep saying that as far as they're concerned, I'm the optimal candidate. In my CF doctor's words yesterday, "The fact that you pulled through a near death experience, are regaining strength, and are up and walking makes you the ideal candidate to get lungs now". Of course it is unbelievably scary to hear "near death experience", but that is about where I was a few days ago.
I really don't remember much from the 2nd to the 7th. Brief flashes of panic. Vomiting the g-tube. Explosive nose bleed from the high pressure nose canula. The unbelievable discomfort of the n-gtube... being commanded to swallow over and over as the placed and replaced it. Screaming about panic attacks. Wanting to just be knocked out. Fighting, fighting, fighting. Not being able to find the control center in my brain. Feeling lost in my own mind and body. Reciting to myself over and over my name, where I was, and who was in the room... it felt like if I didn't I'd forget it. Bi-pap that made me feel like I couldn't breathe at all... that air was stuck in me and would never leave. Having no voice, being unable to communicate, and not being able to get relief. Feeling like my heart was trying to climb out of my body.
But now I'm back in me... I think. Sometimes I still get a little lost in here. Not sure what is going on. Wanting to just know what the next week, day, hour will bring. Wanting relief from the constant poking and prodding and mask and sounds and beeps and tubes and wires and aches. Knowing that will only come with new lungs. That there is still another mountain to climb, at least. And there may be more after that. Wishing I knew how many there were going to be so that I could get in a good place mentally for it, but knowing that is impossible. That bugs me a lot. I like to know what is ahead. But we don't. Holding on to God. Talking to friends and family who are on longer here. Prayer. Hope. Faith. Love.
I am here. I am ready. I am fighting. If the call comes today, Friday the 13th, which already holds special magnificence as I was married on one. Tomorrow is my husband's birthday. A fitting gift would be life for me. The 27th of April is another important day in my life... 25 years ago an emergency appendectomy when I was four. My parent's anniversary. And my beloved and much missed grandfather's birthday. Maybe he'll pull some strings and send me a gift of lungs. Save his "tweetums".
In the words of my Eva, "Love. Always Love".
Friday, April 13, 2012
Thursday, February 2, 2012
Testing is Done and the Verdict is in!
So, testing is all done! Well, except for a pesky 24 hour pee collection, but I'll do that next week.
So, the verdict is that it is still "too early" but that I will be closely monitored. I'll be going to the transplant clinic every 3 months, as well as going to CF clinic even more often, so they will be able to list me as soon as I need it without issue. Since most of the tests that I did this week are good for at least a year, transplant clinic will be far less intense than the last 4 days.
A few things that were learned:
- My lung function is back to where it was before my massive infection at the end of the last year. While it took a very long time to get back and when I had the infection, I was at the lowest lung function of my life, this helps prove that I still have some elasticity to rebound.
- My tolerance to activity has also improved from when I was so sick in December. My 6-minute walk test, which I failed pretty hard back then showed that as long as I don't push myself, I do not need oxygen when walking around.
- The last few echo-cardiograms (ultrasound of the heart) showed that I have elevated pressures on the right side of my heart, which is an indication of my lungs really starting to fail, putting damaging stress on my lungs. However, today's cardiac cath (where they thread a probe from my neck into the arteries of my heart) showed that these pressures are actually much lower.
- My bones, which were right on the line of osteoporosis and osteopenia (pre-osteoporosis) have improved some, and now I am back to only osteopenia.
- My kidneys have stones in them. I have had a few kidney stones before, so it doesn't surprise me that there are some sitting there, but makes me feel like I have a ticking time bomb in there.
Overall, very good news. Though it is still "too early" now, another massive infection could put me there, very quickly, so it is nice to know that as of right now, I'm basically ready to be listed without any additional tests or assessments.
So, the verdict is that it is still "too early" but that I will be closely monitored. I'll be going to the transplant clinic every 3 months, as well as going to CF clinic even more often, so they will be able to list me as soon as I need it without issue. Since most of the tests that I did this week are good for at least a year, transplant clinic will be far less intense than the last 4 days.
A few things that were learned:
- My lung function is back to where it was before my massive infection at the end of the last year. While it took a very long time to get back and when I had the infection, I was at the lowest lung function of my life, this helps prove that I still have some elasticity to rebound.
- My tolerance to activity has also improved from when I was so sick in December. My 6-minute walk test, which I failed pretty hard back then showed that as long as I don't push myself, I do not need oxygen when walking around.
- The last few echo-cardiograms (ultrasound of the heart) showed that I have elevated pressures on the right side of my heart, which is an indication of my lungs really starting to fail, putting damaging stress on my lungs. However, today's cardiac cath (where they thread a probe from my neck into the arteries of my heart) showed that these pressures are actually much lower.
- My bones, which were right on the line of osteoporosis and osteopenia (pre-osteoporosis) have improved some, and now I am back to only osteopenia.
- My kidneys have stones in them. I have had a few kidney stones before, so it doesn't surprise me that there are some sitting there, but makes me feel like I have a ticking time bomb in there.
Overall, very good news. Though it is still "too early" now, another massive infection could put me there, very quickly, so it is nice to know that as of right now, I'm basically ready to be listed without any additional tests or assessments.
Sunday, January 29, 2012
Hello Long Neglected Blog, Big Changes on the Horizon
I know it has been forever since I have posted. I'm trying to change that. Especially as my life is in a major transition now.
As has been on the radar for a few years now, I am finally starting the formal process to be listed for a double lung transplant at Stanford University.
I recently has to change insurance companies, which forced me to change CF clinics. There was about 6 weeks where I essentially went without care. And in those 6 weeks, I came down with a very stubborn infection that did not respond to antibiotics. By the time I was able to be seen by a doctor, my lung functions were at a lifetime low. I was admitted to the hospital for 10 days, shortly before Christmas. I spent a total of 3 weeks on IVs, and while my lung function came back some, it is now in a range where I am a strong candidate for transplantation.
So starting Monday, January 30th, I am going through the testing to determine if it is time, and what score I would have if I were to be listed now. Lungs are given based on a Lung Allocation Score (LAS), which is determined by a number of tests. Whomever has the highest number is first on the list if lungs come up that are compatible with their size and blood type.
I am nervous, excited, anxious, and accepting of this new phase of my life.I have started a Facebook group here for quick updates. Feel free to join the group, but I am also going to try to hold myself accountable for updating here more often.
As has been on the radar for a few years now, I am finally starting the formal process to be listed for a double lung transplant at Stanford University.
I recently has to change insurance companies, which forced me to change CF clinics. There was about 6 weeks where I essentially went without care. And in those 6 weeks, I came down with a very stubborn infection that did not respond to antibiotics. By the time I was able to be seen by a doctor, my lung functions were at a lifetime low. I was admitted to the hospital for 10 days, shortly before Christmas. I spent a total of 3 weeks on IVs, and while my lung function came back some, it is now in a range where I am a strong candidate for transplantation.
So starting Monday, January 30th, I am going through the testing to determine if it is time, and what score I would have if I were to be listed now. Lungs are given based on a Lung Allocation Score (LAS), which is determined by a number of tests. Whomever has the highest number is first on the list if lungs come up that are compatible with their size and blood type.
I am nervous, excited, anxious, and accepting of this new phase of my life.I have started a Facebook group here for quick updates. Feel free to join the group, but I am also going to try to hold myself accountable for updating here more often.
Saturday, July 16, 2011
Latest Clinic
Today's CF Clinic was interesting.
For a few years now, my FEV1 (a measure of how much air can be pushed out in the first second) has been hovering around 30%. Sometimes a bit higher, sometimes a bit lower. This is somewhat a "magic bullet" number in the CF world, a line where transplant becomes a serious conversation. When I started to hit 30% regularly, Portland seemed to advocate a wait and see model. Wait for something else to happen, because I was still functioning very well, and rarely had infections. It was a stance that I was semi-uncomfortable with. Yes, I was stable then, but it is impossible to tell how long I was going to stay stable. I wanted to start the transplant process, as far as at least meeting the team in Seattle, which is the closest transplant center to Eugene, OR, where I was living at the time. Starting some of the tests to see how damaged my lungs were. Portland did not agree with me on this, and when I moved away, we were still at this impasse.
Moving to Vegas, they were surprised with the attitude that Vegas took. They thought that while I was healthy, while I was stable, I was close to the edge, and that tipping point could be tomorrow, or years from now, but that tipping point was close, and getting the transplant ball rolling would be in my best interest if the tipping point indeed happened sooner, rather than later. In the short year that I was in Vegas, I completed the majority of tests for transplantation, and made a trip to meet the team at UCLA. They too thought that I was too healthy at that current moment, but that it would be wise to check in with me a couple to a few times a year to make sure that I was not declining. They said that if I demanded it, I could be listed for lungs, but given my low infection rate and ability to function, staying with my current lungs was probably in my best interest.
And now I'm living in the Bay area... with another CF team. They take a fairly similar perspective to the Vegas team. I am close, but not quite there, and my doctor thinks that right now, the two lung transplant centers would say that I'm not quite sick enough to qualify. Because of the newer system of allocating lungs based on need as opposed to wait time, 30% is not quite the magic number that it used to be. It's now much more based on the patient, and how they cope with their numbers. How they cope with the severity of the disease. And while there is no question that my lungs are severely diseased, they aren't quite ready to give up on me yet. This could change tomorrow. Or I could sit here for many years. There is no predictor. Even with having MRSA, which can be very harmful in some patients, it appears that to me, it does not cause the steep decline seen in others. They have had me complete a few more tests that are needed before one can be listed for transplant... but otherwise we just wait and monitor.
My lung function tests today had some interesting numbers. My FEV1, was 29%, which is what it was last clinic. However, my FVC, the total amount of air I can get into my lungs, declined a bit. This is somewhat unusual to not have a drop in FEV1, yet have a drop in FVC. Because of this decline, I'll be doing a course of oral antibiotics, including one that I have not tried yet. I really enjoyed that my doctor gave me the reasoning behind the drugs he chose. He is also starting me on a weekly osteoporosis med. It's something that I've been close to needing for years. But my latest bone density finally show a change from osteopenic to osteoporosis. Though, I am literally on the border, strong bones are essential for post-transplant survival, and living long in general, so I'm starting on this med.
Also, my last sputum cultures showed a very odd strain of Pseudomonas that I've never had before and is resistant to everything. My doctor thinks that it may have been a one time thing, that it didn't colonize, and will not show up again. This is backed up by me getting sick pretty hard right after that culture, than feeling better than I've felt in some time. He's hopeful that my immune system took care of it... me too...
I am also changing my diabetes medication. Gone is Januvia... but replaced by another oral med that I only take when I am eating a carb dense meal. I'm not sure yet what I think about this plan, but I am willing to try it, especially to avoid insulin as long as possible, because I really do not want to add something more intensive to my medication routine. I also run several low blood sugars, without insulin, so it may not be the wisest thing for me right now.
So that's a long overdue update on my health. I hope to get back to writing more. I can't really explain my long absence, other than I've not felt the strong urge to write. Or more accurately, I have not felt that I have been able to write something up to the standards that i hold with myself.
For a few years now, my FEV1 (a measure of how much air can be pushed out in the first second) has been hovering around 30%. Sometimes a bit higher, sometimes a bit lower. This is somewhat a "magic bullet" number in the CF world, a line where transplant becomes a serious conversation. When I started to hit 30% regularly, Portland seemed to advocate a wait and see model. Wait for something else to happen, because I was still functioning very well, and rarely had infections. It was a stance that I was semi-uncomfortable with. Yes, I was stable then, but it is impossible to tell how long I was going to stay stable. I wanted to start the transplant process, as far as at least meeting the team in Seattle, which is the closest transplant center to Eugene, OR, where I was living at the time. Starting some of the tests to see how damaged my lungs were. Portland did not agree with me on this, and when I moved away, we were still at this impasse.
Moving to Vegas, they were surprised with the attitude that Vegas took. They thought that while I was healthy, while I was stable, I was close to the edge, and that tipping point could be tomorrow, or years from now, but that tipping point was close, and getting the transplant ball rolling would be in my best interest if the tipping point indeed happened sooner, rather than later. In the short year that I was in Vegas, I completed the majority of tests for transplantation, and made a trip to meet the team at UCLA. They too thought that I was too healthy at that current moment, but that it would be wise to check in with me a couple to a few times a year to make sure that I was not declining. They said that if I demanded it, I could be listed for lungs, but given my low infection rate and ability to function, staying with my current lungs was probably in my best interest.
And now I'm living in the Bay area... with another CF team. They take a fairly similar perspective to the Vegas team. I am close, but not quite there, and my doctor thinks that right now, the two lung transplant centers would say that I'm not quite sick enough to qualify. Because of the newer system of allocating lungs based on need as opposed to wait time, 30% is not quite the magic number that it used to be. It's now much more based on the patient, and how they cope with their numbers. How they cope with the severity of the disease. And while there is no question that my lungs are severely diseased, they aren't quite ready to give up on me yet. This could change tomorrow. Or I could sit here for many years. There is no predictor. Even with having MRSA, which can be very harmful in some patients, it appears that to me, it does not cause the steep decline seen in others. They have had me complete a few more tests that are needed before one can be listed for transplant... but otherwise we just wait and monitor.
My lung function tests today had some interesting numbers. My FEV1, was 29%, which is what it was last clinic. However, my FVC, the total amount of air I can get into my lungs, declined a bit. This is somewhat unusual to not have a drop in FEV1, yet have a drop in FVC. Because of this decline, I'll be doing a course of oral antibiotics, including one that I have not tried yet. I really enjoyed that my doctor gave me the reasoning behind the drugs he chose. He is also starting me on a weekly osteoporosis med. It's something that I've been close to needing for years. But my latest bone density finally show a change from osteopenic to osteoporosis. Though, I am literally on the border, strong bones are essential for post-transplant survival, and living long in general, so I'm starting on this med.
Also, my last sputum cultures showed a very odd strain of Pseudomonas that I've never had before and is resistant to everything. My doctor thinks that it may have been a one time thing, that it didn't colonize, and will not show up again. This is backed up by me getting sick pretty hard right after that culture, than feeling better than I've felt in some time. He's hopeful that my immune system took care of it... me too...
I am also changing my diabetes medication. Gone is Januvia... but replaced by another oral med that I only take when I am eating a carb dense meal. I'm not sure yet what I think about this plan, but I am willing to try it, especially to avoid insulin as long as possible, because I really do not want to add something more intensive to my medication routine. I also run several low blood sugars, without insulin, so it may not be the wisest thing for me right now.
So that's a long overdue update on my health. I hope to get back to writing more. I can't really explain my long absence, other than I've not felt the strong urge to write. Or more accurately, I have not felt that I have been able to write something up to the standards that i hold with myself.
Sunday, March 27, 2011
One Year
I know where I was a year ago. Standing on the Hoover Dam, when I got the phone call... Eva was gone. I knew it was coming, despite my greatest hopes that the miracle would come. It had been clear for a few weeks that it probably wouldn't. Still, to know that it would never come, my heart broke into a million pieces.
Standing on one of the greatest monuments to man standing up against nature, creating life where it wasn't meant to be, I had a hard time bringing the words to my lips to tell my husband and one of my best friends that was in town that she was gone. I didn't want to say them, because I didn't want to validate them being true. My FB and twitter began to fill up with condolences. It meant a lot. The little village that spanned the world, brought together by CF and her unflinching words, was there to help rally around me.
I've had a hard time writing ever since. It's hard for me to pinpoint why. I feel like I should. I need to on some level. But, it just, I don't know. I met Eva through this keyboard. Through the internet community. We stood by each other through loss. We had a blessed day together when she was the picture of health. And I got to see her sparkle on the red carpet. And now, I'm left to help carry on her legacy. And I feel that nothing I write would ever be able to capture how much she meant to me.
The unflinching truth about me? CF is slowly getting me. I'm still not quite sick enough for a transplant, but I doubt I will ever have a day where I truly feel GOOD until I am hopefully blessed with the gift of life from another. That's a lot to deal with at 28. My house is a mess around me. It's hard physically to do the work, and mentally to deal with that I can't do all that I want to. But, I am trying. Slowly I see more of me appearing from the bounds of my body.
But the winds continue to swirl. The sun rises and sets. Life continues. My life continues. I continue to try, though I don't always know where I'm headed, I try to head there with love. Love. Always love.
Standing on one of the greatest monuments to man standing up against nature, creating life where it wasn't meant to be, I had a hard time bringing the words to my lips to tell my husband and one of my best friends that was in town that she was gone. I didn't want to say them, because I didn't want to validate them being true. My FB and twitter began to fill up with condolences. It meant a lot. The little village that spanned the world, brought together by CF and her unflinching words, was there to help rally around me.
I've had a hard time writing ever since. It's hard for me to pinpoint why. I feel like I should. I need to on some level. But, it just, I don't know. I met Eva through this keyboard. Through the internet community. We stood by each other through loss. We had a blessed day together when she was the picture of health. And I got to see her sparkle on the red carpet. And now, I'm left to help carry on her legacy. And I feel that nothing I write would ever be able to capture how much she meant to me.
The unflinching truth about me? CF is slowly getting me. I'm still not quite sick enough for a transplant, but I doubt I will ever have a day where I truly feel GOOD until I am hopefully blessed with the gift of life from another. That's a lot to deal with at 28. My house is a mess around me. It's hard physically to do the work, and mentally to deal with that I can't do all that I want to. But, I am trying. Slowly I see more of me appearing from the bounds of my body.
But the winds continue to swirl. The sun rises and sets. Life continues. My life continues. I continue to try, though I don't always know where I'm headed, I try to head there with love. Love. Always love.
Sunday, November 14, 2010
Bad Times are gone!
We have employment! An update on the major changes in our lives to come soon!
Bad times here at the Fairfax household. As of Thursday, Matt unexpectedly lost his job when his company shuttered their doors. They were the whole reason behind our move to Vegas last December, and now we have nothing coming in beyond my disability.
He's madly looking for another job... that may leave us here, take us back to Oregon, or anywhere between the Bay Area, to the Carolinas... but we have to find something.
I am of course, freaking out about medical costs, what to do about insurance, and all of that. Will be putting a call into the social worker here, and probably at my old clinic in Portland to see what my options are. Going on Medicare is an option, as well as Cobra, but we have no idea how much these two things will cost us. I have an okay stockpile on medications, though some I have virtually none.
I don't know where our lives are going to go. And that is terrifying. Though I really hate asking for help, I will include a link to my paypal. Even a few bucks will help us out right now, until we get our feet under us again. I've been in the position so long to be able to help, and have. It's strange and scary to be on the other side.
Bad times here at the Fairfax household. As of Thursday, Matt unexpectedly lost his job when his company shuttered their doors. They were the whole reason behind our move to Vegas last December, and now we have nothing coming in beyond my disability.
He's madly looking for another job... that may leave us here, take us back to Oregon, or anywhere between the Bay Area, to the Carolinas... but we have to find something.
I am of course, freaking out about medical costs, what to do about insurance, and all of that. Will be putting a call into the social worker here, and probably at my old clinic in Portland to see what my options are. Going on Medicare is an option, as well as Cobra, but we have no idea how much these two things will cost us. I have an okay stockpile on medications, though some I have virtually none.
I don't know where our lives are going to go. And that is terrifying. Though I really hate asking for help, I will include a link to my paypal. Even a few bucks will help us out right now, until we get our feet under us again. I've been in the position so long to be able to help, and have. It's strange and scary to be on the other side.
Tuesday, November 2, 2010
Dear Eva
Dear Eva,
7 months since you left this world. Tonight another cystic friend left this world. Invite Gess to the party... he may be shy at first, but if anyone can pull someone out of their shell, it's you.
For Good is on right now, playing on my iTunes shuffle. I don't know how well I'm doing, living the life lessons you taught me. Right now, my life is going so many directions, yet at the same time I feel stuck in the doldrums of being sick. but I'm starting on the next big step. My first meeting with the transplant team at UCLA happened on October 14th, nearly a year to the day after I last hugged you. I know you and Jenn were there with me... my CF cysters who hold me when I'm scared.
The transplant team thinks that I'm still too healthy, which I agree with, but they're going to keep a close eye on me... for which I'm grateful for. I am so scared of getting too sick, waiting too long, or suddenly being gone like Jenn. I'm scared for my family, for Matt, for my friends... I need to make it through this, I need to breathe again.
I miss you girl, each and every day. Squish Jenn for me, have a dance party, and welcome Gess. I'll talk to you again soon.
Talana
7 months since you left this world. Tonight another cystic friend left this world. Invite Gess to the party... he may be shy at first, but if anyone can pull someone out of their shell, it's you.
For Good is on right now, playing on my iTunes shuffle. I don't know how well I'm doing, living the life lessons you taught me. Right now, my life is going so many directions, yet at the same time I feel stuck in the doldrums of being sick. but I'm starting on the next big step. My first meeting with the transplant team at UCLA happened on October 14th, nearly a year to the day after I last hugged you. I know you and Jenn were there with me... my CF cysters who hold me when I'm scared.
The transplant team thinks that I'm still too healthy, which I agree with, but they're going to keep a close eye on me... for which I'm grateful for. I am so scared of getting too sick, waiting too long, or suddenly being gone like Jenn. I'm scared for my family, for Matt, for my friends... I need to make it through this, I need to breathe again.
I miss you girl, each and every day. Squish Jenn for me, have a dance party, and welcome Gess. I'll talk to you again soon.
Talana
Tuesday, September 14, 2010
Slipped Stitch Stripey Hat
I made this lovely hat with yarn that was graciously given to me by the lovely people at Crystal Palace yarns. I love the mochi line, with its rich colors, and amazing softness. This hat has an option to fold the brim up to have a short hat, or bring the brim down to cover the ears.
Materials - 2 balls of Chunky Mochi
Size 10 Needles
Abbreviations -
k - knit
p - purl
s|1 - Slip one stitch
k2tog - knit two together
Procedure -
Brim - Cast on 64 stitches using the long tail method. Join to work in the round. *K1,P3* until brim measures 2 inches. On the following round, knit all stitches. Then purl all stitches for a round. This creates a nice line for folding, and a break in the visual line between the brim and the body of the hat.
Body - Round 1 - *k3,s|1*
Round 2 - *k*
Repeat these two rounds until hat measures approximately 4-5 inches from brim.
Decrease Rounds - Round 1 - *k1,k2tog,s|1,k3,s|1* (56 stitches on the needles)
Round 2 - *k*
Round 3 - *k2,s|1,k1,k2tog,s|1* (48 stitches on the needles)
Round 4 - *k*
Round 5 - *k2tog,s|1,k2,s|1* (40 stitches)
Round 6 - *k*
Round 7 - *k1,s|1,k2tog,s|1* (32 stitches)
Round 8 - *k*
Round 9 - *k2tog,k2* (24 stitches)
Round 10 - *k*
Round 11 - *k2,k2tog* (16 stitches)
Round 12 - *k*
Round 13 - *k2tog* (8 stitches)
Round 14 - *k*
Kitchner stitch the remaining 8 stitches together. Weave in ends.
Thursday, July 1, 2010
Today's Clinic...
Didn't go so great. Despite being up 10 lbs, which should be cause for celebration, my PFTs were down 5%. Under 30%. They wanted to admit me, start me on IVs, but I have to hold off. We have plans, and as I don't feel bad, I am going to go home to Oregon, then to South Carolina to see Matt's family, then I will go into the hospital. I know some people out there in cyberland think that I'm probably crazy for doing that, and that I'm not putting my health first. Maybe. But maybe not. Because I know my emotional and mental health would take a HUGE hit not going home in 8 days... it's my birthday weekend and I want to be home. And we haven't been to South Carolina in a year and a half, and I'm desperate to see that side of my family. Plus, I don't feel bad. Other than shortness of breath, I am trucking along just fine. So my doctor reluctantly handed me oral antibiotics and some prednisone. When I get back at the end of July, I'll go in for those IV's, as well as starting testing for a lung transplant evaluation.
Friday, June 25, 2010
Conner
I hate CF.
When I can't breathe.
When friends die.
When the bills are too much to pay.
But nothing is greater than the rage, sadness, and desperation for refuge that I feel when a young child dies of this beast.
Conner, you fought so hard. Peace and love to your family, as you finally run and play without gasping for breath
When I can't breathe.
When friends die.
When the bills are too much to pay.
But nothing is greater than the rage, sadness, and desperation for refuge that I feel when a young child dies of this beast.
Conner, you fought so hard. Peace and love to your family, as you finally run and play without gasping for breath
Friday, May 21, 2010
27, planning 30
I'm already planning my 30th birthday. It doesn't matter that I'm yet to turn 29, or even 28 for that matter, I'm already thinking about what I want to do for my 30th. I don't think there is anyone else in this world that anticipates 30 quite like a cystic born in my generation.
When we were born, 18 was about the best that anyone could ask for. Parents were told to take their kids home and enjoy them while they still had them. Growing up was a dream. Our childhood was a period of great discovery in the CF world, from finding the gene, developing new medication, and discovering better therapy protocols. By the time we were teenagers, the life expectancy had grown to 30. Where it sat. And sat. And sat. It's slowly crept up since then, but for a long time 30 was the magic number.
And now 30 is slowly coming into sight. I know that it's still a long time off though, when you only have 30% lung capacity. It's a very real possibility that between here and there, I may have a lung transplant. It's a very real possibility that I stay the same or very slowly decline. It's also a very real possibility that I won't see 30 at all.
I'm pretty sure I'll make it to 28. Shoot, the groceries I'm buying lately have my birthday as their use by date. If they can make it to July 12th, then so can I. And 28 is awesome... but it's no 30.
Do I have a huge party? Would anyone come? (wait Talana, the "I'm insecure and nobody loves me" post is for another time) Maybe a cruise? I'd want some people that I love to come with me like my parents and my sister.
When we were born, 18 was about the best that anyone could ask for. Parents were told to take their kids home and enjoy them while they still had them. Growing up was a dream. Our childhood was a period of great discovery in the CF world, from finding the gene, developing new medication, and discovering better therapy protocols. By the time we were teenagers, the life expectancy had grown to 30. Where it sat. And sat. And sat. It's slowly crept up since then, but for a long time 30 was the magic number.
And now 30 is slowly coming into sight. I know that it's still a long time off though, when you only have 30% lung capacity. It's a very real possibility that between here and there, I may have a lung transplant. It's a very real possibility that I stay the same or very slowly decline. It's also a very real possibility that I won't see 30 at all.
I'm pretty sure I'll make it to 28. Shoot, the groceries I'm buying lately have my birthday as their use by date. If they can make it to July 12th, then so can I. And 28 is awesome... but it's no 30.
Do I have a huge party? Would anyone come? (wait Talana, the "I'm insecure and nobody loves me" post is for another time) Maybe a cruise? I'd want some people that I love to come with me like my parents and my sister.
Tuesday, May 4, 2010
Holding Fast to Quicksand
This weekend was a study in all the parallels of the CF world. Of all the intrinsic parts of holding on to fleeting moments.
I traveled to Boston this weekend for Paul's memorial service. Though he passed away last year, the service wasn't until this weekend. It gave the perfect opportunity for a large portion of Q's online community to plan their travel from all corners of the US. North Carolina, California, Washington, Indiana... cystics climbed in their cars, boarded planes, and traveled to gather to honor one of their own. We're not supposed to. We're not supposed to ever meet. But we do. Germs be damned, a gathering of those that understand at a level that could never be understood by a non-mutant, a genotypical, is something to behold. I'll post pictures later, but seeing so many strong, wonderful, beautiful people that all share the same monster is amazing. People that despite having a lung transplant mere weeks ago, or lugging a portable oxygen concentrator, or hooking up an IV during lunch, are able to laugh, smile, and be so happy to be a part of the coughing chorus.
But even as we stood there, baking in the unusually warm Boston spring day, friends were dying of the same monster. We lost several in the CF community this weekend. Some of those that were healthy, living, so alive, only weeks ago. Infections that were so fierce that they couldn't be defeated. I don't remember a time before that so many people went from moderate health to dead in only a few weeks. It's scary, because I know it could be me next... or any of my friends.
Some wonder, why would you subject yourself to knowing so many people with CF. The emotional pain that must come from it must be extreme. The dangers of meeting them in person, the possible transfer of bugs, how could you possibly risk that? I wonder how I could possibly not. I would not be the same strong, resolute, and emotionally stable person without these friends. Without these people that get me. And while the online world is amazing, knowing them in person, hearing them cough just like me, seeing them pop their pills, and rest at the bottom, middle, top, and 15 more times in between while climbing a hill, words can't express what that does for my mental health. What that does to make me feel less alone. More connected. More reasons to do my treatments, to fight, and to walk down that transplant path which is rapidly approaching. Giving me strength to start the evaluation process in the near future. I couldn't do it alone. And while my genotypical support group is also VERY important, I couldn't do it with out my nebutants.
I traveled to Boston this weekend for Paul's memorial service. Though he passed away last year, the service wasn't until this weekend. It gave the perfect opportunity for a large portion of Q's online community to plan their travel from all corners of the US. North Carolina, California, Washington, Indiana... cystics climbed in their cars, boarded planes, and traveled to gather to honor one of their own. We're not supposed to. We're not supposed to ever meet. But we do. Germs be damned, a gathering of those that understand at a level that could never be understood by a non-mutant, a genotypical, is something to behold. I'll post pictures later, but seeing so many strong, wonderful, beautiful people that all share the same monster is amazing. People that despite having a lung transplant mere weeks ago, or lugging a portable oxygen concentrator, or hooking up an IV during lunch, are able to laugh, smile, and be so happy to be a part of the coughing chorus.
But even as we stood there, baking in the unusually warm Boston spring day, friends were dying of the same monster. We lost several in the CF community this weekend. Some of those that were healthy, living, so alive, only weeks ago. Infections that were so fierce that they couldn't be defeated. I don't remember a time before that so many people went from moderate health to dead in only a few weeks. It's scary, because I know it could be me next... or any of my friends.
Some wonder, why would you subject yourself to knowing so many people with CF. The emotional pain that must come from it must be extreme. The dangers of meeting them in person, the possible transfer of bugs, how could you possibly risk that? I wonder how I could possibly not. I would not be the same strong, resolute, and emotionally stable person without these friends. Without these people that get me. And while the online world is amazing, knowing them in person, hearing them cough just like me, seeing them pop their pills, and rest at the bottom, middle, top, and 15 more times in between while climbing a hill, words can't express what that does for my mental health. What that does to make me feel less alone. More connected. More reasons to do my treatments, to fight, and to walk down that transplant path which is rapidly approaching. Giving me strength to start the evaluation process in the near future. I couldn't do it alone. And while my genotypical support group is also VERY important, I couldn't do it with out my nebutants.
Tuesday, April 13, 2010
Knitting :)
When you sit at home all day, unable to work, and your only vehicle with your husband at work, you have a little time on your hands.
So you knit :)
Also through knitting groups, I've found fantastic friends here in Vegas... which is so helpful to my mental health. Moving from the area where you've lived your entire life, where you can the into the grocery store and see your cousin, or wave a pedestrian across the street and notice it's a kid you used to babysit, or even somewhere that your Dad's boss is a kid you graduated with. Vegas, I seriously knew no one... so meeting these wonderful women, who also share a fiber obsession has been a huge help!
So you knit :)
Also through knitting groups, I've found fantastic friends here in Vegas... which is so helpful to my mental health. Moving from the area where you've lived your entire life, where you can the into the grocery store and see your cousin, or wave a pedestrian across the street and notice it's a kid you used to babysit, or even somewhere that your Dad's boss is a kid you graduated with. Vegas, I seriously knew no one... so meeting these wonderful women, who also share a fiber obsession has been a huge help!
Saturday, April 3, 2010
Eva
It's taken me a few days to be able to even write anything. To even process.
The weight of you being gone, it just sucked the air out of me.
A glance at my piano. The piano that I played the sheet music on that you bought me while you sang, when those lungs were giving you the life that you always dreamed of.
The pile of red yarn sitting next to my bed, destined to be designed into a shawl to remember you, tiny beads of rouge and silver, glass roses, red of course, to play along the edges.
The lessons you taught me, the ones that you said that I taught you, even though I can't hardly imagine that I could have anything to offer you. I always was amazed that you picked me, chose me, in all my broken and selfish and me ways, that you picked little ol' me to be part of that special group. It's strange looking up to someone who is younger than you, though that looking up was always literal, you made me feel like I should launch into a rousing rendition of "Lolly Pop Guild".
I may appear to a lot of people to be fairly fearless. You saw right through that. Saw all the walls that I put up around my insecurities. That I don't live in fear, but I don't live vibrantly, because if I don't, then I don't have much to be scared of. You're one of the few people that ever saw it, that ever had the words to tell me to buck up. You told me, as my health began to slip, to never be afraid of living. To not give in to the fact that I was sick and to crawl into a hole. That I still needed to live, vibrantly. Lord knows that I try. It's scary. Unbelievably so. You had a way of pushing me, to say what I was scared to say, because I didn't want people to know what I really felt. I don't know how, but you were able to do that. And I know I pushed you sometimes. When I saw a bit of me reflected in you.
Though I don't talk a lot about my faith on here, it's a theme in my life. One that you latched on to. You told me that I helped you find God. It gives me a lot of comfort right now. I rarely proclaim my Christianity, because I'm often judged to be a poor Christian, because I don't go to church, I'm a proud liberal, who is pro choice, pro same sex marriage, and I cuss like a sailor. I'm not perfect. But I do believe in God, and I do believe in Heaven, and I've had experiences that make my faith rock solid. That this girl, who has been told by a few too many Christians that her faith is not worthy because of her beliefs, helped someone believe, by living a quiet believing life. That's a part of God's great miracle.
That's the thing about us. Though we grew up miles apart, in different countries, there was so much that I could see in you, that I felt in me. Not that I could ever be as loving as you. That takes something, a gift that I wasn't quite born with. But yet, we both always tried to see the best in people, the best in situations, even though it sometimes takes me a bit do so, once I dealt with my demons. The same demon that haunted you at the end. Fear. But love was able to calm the demon.
So to you, for you, my Eva, I will try. I will try to be as honest with myself, and my readers, and my friends, and my family, and everything, that I can be. Because that is what you wanted from me.
Dance for me sweet girl. Until we can run, and dance, and play together, never once gasping for breath.
The weight of you being gone, it just sucked the air out of me.
A glance at my piano. The piano that I played the sheet music on that you bought me while you sang, when those lungs were giving you the life that you always dreamed of.
The pile of red yarn sitting next to my bed, destined to be designed into a shawl to remember you, tiny beads of rouge and silver, glass roses, red of course, to play along the edges.
The lessons you taught me, the ones that you said that I taught you, even though I can't hardly imagine that I could have anything to offer you. I always was amazed that you picked me, chose me, in all my broken and selfish and me ways, that you picked little ol' me to be part of that special group. It's strange looking up to someone who is younger than you, though that looking up was always literal, you made me feel like I should launch into a rousing rendition of "Lolly Pop Guild".
I may appear to a lot of people to be fairly fearless. You saw right through that. Saw all the walls that I put up around my insecurities. That I don't live in fear, but I don't live vibrantly, because if I don't, then I don't have much to be scared of. You're one of the few people that ever saw it, that ever had the words to tell me to buck up. You told me, as my health began to slip, to never be afraid of living. To not give in to the fact that I was sick and to crawl into a hole. That I still needed to live, vibrantly. Lord knows that I try. It's scary. Unbelievably so. You had a way of pushing me, to say what I was scared to say, because I didn't want people to know what I really felt. I don't know how, but you were able to do that. And I know I pushed you sometimes. When I saw a bit of me reflected in you.
Though I don't talk a lot about my faith on here, it's a theme in my life. One that you latched on to. You told me that I helped you find God. It gives me a lot of comfort right now. I rarely proclaim my Christianity, because I'm often judged to be a poor Christian, because I don't go to church, I'm a proud liberal, who is pro choice, pro same sex marriage, and I cuss like a sailor. I'm not perfect. But I do believe in God, and I do believe in Heaven, and I've had experiences that make my faith rock solid. That this girl, who has been told by a few too many Christians that her faith is not worthy because of her beliefs, helped someone believe, by living a quiet believing life. That's a part of God's great miracle.
That's the thing about us. Though we grew up miles apart, in different countries, there was so much that I could see in you, that I felt in me. Not that I could ever be as loving as you. That takes something, a gift that I wasn't quite born with. But yet, we both always tried to see the best in people, the best in situations, even though it sometimes takes me a bit do so, once I dealt with my demons. The same demon that haunted you at the end. Fear. But love was able to calm the demon.
So to you, for you, my Eva, I will try. I will try to be as honest with myself, and my readers, and my friends, and my family, and everything, that I can be. Because that is what you wanted from me.
Dance for me sweet girl. Until we can run, and dance, and play together, never once gasping for breath.
Wednesday, March 24, 2010
Monday, March 22, 2010
Silly Canada
When I was a very little girl, I thought that since both Heaven and Washington were up, that clearly, when I looked at the sky, I was looking at the bottom of Washington, and the people in Washington were looking at the bottom of Heaven. Imagine my surprise when I learned that Canada was above Washington, and up meant nothing on a sphere.
Wednesday, February 24, 2010
The Elephant in the Room
A CF mom blog broke my heart today. The comments in it broke my heart further. Moms who plan on not telling their young CF kids that CF is fatal. Their reasoning is that it some how lessens the fight, or makes it more difficult. And my heart breaks in a million pieces for these kids. Because like it or not, CF is fatal. And that isn't stopped by positive thoughts and rainbows. Truth, reality, facts, they don't change the fight for a cure, the fight to live. They only make the urge to fight stronger, the will to live even more passionate, because the chance of dying is brought into focus. The following is an excerpt from my comments on the blog, and replying to a mom saying that being realistic makes their fight harder, something that totally baffles me, since we are ALL IN THE SAME FIGHT.
In reply to the blog:
This may seem unwanted, or out of line, but I beg you to not conceal from G that CF may kill him. I'm unclear if you would do so or not by not telling him it's fatal... but I know a number of cystics who had a VERY rough time because their parents didn't tell them that CF was fatal. That learned from playground teasing, or an encyclopedia, or a news article. A pretty devastating way to learn, that really damaged some people, and ruined the trust bond amongst many children and their parents. The new therapies on the horizon are very promising, but it remains that CF will kill, eventually. Parents who didn't tell their now older children thought very much like you that CF would be beaten before it became an issue, and it very well may be, but it very well may not be.
Vertex is the greatest hope in a long time, but it is still not a cure, and it's unknown what the long term battle with CF will look like with it.
Yes, CF sucks. Yes, we need to fight. But hiding the truth, as it now stands, about CF, doesn't make you, or G, or any cystic, any less of a fighter.
And in reply to the comment that said I was making the fight harder:
I'm sorry that you feel that being realistic makes your fight harder. That somehow we are on different sides in facing the same monster. My heart breaks a little for your young CFer... as it does every time that I hear a fellow cystic being withheld information about the monster that lives within them.
I was raised by parents who felt that the most effective way to help me deal with CF, and all of its realities, is to NEVER hide anything about CF. To never shy away from the fact that its possibility of killing me was very high. And I can't thank them enough for that. From the time I was very little, I could ask any question I wanted to about CF, and know that it would be answered truthfully.
I was maybe four or five when I started asking about my future. About maybe what CF meant in that. Very, very young to start asking those questions. And my parents had a choice. Hold on to hope that CF would be cured before my mortality came into question, let me know that the monster within may very well kill me. Sure, this was the mid 1980s, and the lifespan prognosis for CF was very different, but the ultimate outcome was not. This was the time they were finding the gene, and proclaiming that a cure was 5 years away, 10 at most. Surely their very healthy child, who yet needed so much as a nebulizer or a hospital stay could hold on for that long. Surely they wouldn't need to let their preschooler know that she lived with a ticking time bomb. But they did. And I praise them for that. They let me know that CF was very serious, and it was a very real possibility that someday I may get very sick, and that someday CF very well may kill me.
I know. No parent would ever want that conversation. I don't really remember any of this talk. But I do remember always knowing that CF may mean a shortened life. That keeping healthy, going to the doctor, and fighting for a cure were all ways that I could look this fact in the face. It made every treatment, every doctor's visit, and every day worth more, because I knew how vitally important they were.
When I was eight, I learned that a friend, my age, had died of CF. The reality of what death, CF, and everything came crashing in. It was a VERY rough time, but something that I came out the other side much stronger... because my parents were willing to be there, talk about mortality, and acknowledge that there was no way to know what mine, or anyone's future may bring. I emerged from this rough patch a short time later, willing to do all I could to fight... and knowing what was at stake if I didn't. I didn't have to experience years of being unsettled about not knowing why I did my treatments, like some friends whose parents not only hid fatality, but the very existence of CF from their kids. I didn't have to feel like I couldn't trust my parents because they hid something so vital, as far too many people I know did because they found out on their own what CF meant. I didn't have to be shocked by another kid proclaiming "My mom says CF will kill you", as a sickening number of cystics have over the years.
Not admitting that CF is a deadly disease does not change the fact that kids, young kids, kids who are not even teenagers, still die of it today. It's not as common, but it still happens. It does not change that there is not a cure, it does not change that a life is irrevocably altered by CF. Understanding fatality does not decrease the fight, does not make life less lived, and does not end all hope. In my mind it increases all of those things a million times, because all cards are on the table.
ETA: I find it a pretty sad commentary that this CF mom blocked me from following her site. It won't start me from voicing my opinion and the damage that has occurred from not being very frank about the realities of CF.
In reply to the blog:
This may seem unwanted, or out of line, but I beg you to not conceal from G that CF may kill him. I'm unclear if you would do so or not by not telling him it's fatal... but I know a number of cystics who had a VERY rough time because their parents didn't tell them that CF was fatal. That learned from playground teasing, or an encyclopedia, or a news article. A pretty devastating way to learn, that really damaged some people, and ruined the trust bond amongst many children and their parents. The new therapies on the horizon are very promising, but it remains that CF will kill, eventually. Parents who didn't tell their now older children thought very much like you that CF would be beaten before it became an issue, and it very well may be, but it very well may not be.
Vertex is the greatest hope in a long time, but it is still not a cure, and it's unknown what the long term battle with CF will look like with it.
Yes, CF sucks. Yes, we need to fight. But hiding the truth, as it now stands, about CF, doesn't make you, or G, or any cystic, any less of a fighter.
And in reply to the comment that said I was making the fight harder:
I'm sorry that you feel that being realistic makes your fight harder. That somehow we are on different sides in facing the same monster. My heart breaks a little for your young CFer... as it does every time that I hear a fellow cystic being withheld information about the monster that lives within them.
I was raised by parents who felt that the most effective way to help me deal with CF, and all of its realities, is to NEVER hide anything about CF. To never shy away from the fact that its possibility of killing me was very high. And I can't thank them enough for that. From the time I was very little, I could ask any question I wanted to about CF, and know that it would be answered truthfully.
I was maybe four or five when I started asking about my future. About maybe what CF meant in that. Very, very young to start asking those questions. And my parents had a choice. Hold on to hope that CF would be cured before my mortality came into question, let me know that the monster within may very well kill me. Sure, this was the mid 1980s, and the lifespan prognosis for CF was very different, but the ultimate outcome was not. This was the time they were finding the gene, and proclaiming that a cure was 5 years away, 10 at most. Surely their very healthy child, who yet needed so much as a nebulizer or a hospital stay could hold on for that long. Surely they wouldn't need to let their preschooler know that she lived with a ticking time bomb. But they did. And I praise them for that. They let me know that CF was very serious, and it was a very real possibility that someday I may get very sick, and that someday CF very well may kill me.
I know. No parent would ever want that conversation. I don't really remember any of this talk. But I do remember always knowing that CF may mean a shortened life. That keeping healthy, going to the doctor, and fighting for a cure were all ways that I could look this fact in the face. It made every treatment, every doctor's visit, and every day worth more, because I knew how vitally important they were.
When I was eight, I learned that a friend, my age, had died of CF. The reality of what death, CF, and everything came crashing in. It was a VERY rough time, but something that I came out the other side much stronger... because my parents were willing to be there, talk about mortality, and acknowledge that there was no way to know what mine, or anyone's future may bring. I emerged from this rough patch a short time later, willing to do all I could to fight... and knowing what was at stake if I didn't. I didn't have to experience years of being unsettled about not knowing why I did my treatments, like some friends whose parents not only hid fatality, but the very existence of CF from their kids. I didn't have to feel like I couldn't trust my parents because they hid something so vital, as far too many people I know did because they found out on their own what CF meant. I didn't have to be shocked by another kid proclaiming "My mom says CF will kill you", as a sickening number of cystics have over the years.
Not admitting that CF is a deadly disease does not change the fact that kids, young kids, kids who are not even teenagers, still die of it today. It's not as common, but it still happens. It does not change that there is not a cure, it does not change that a life is irrevocably altered by CF. Understanding fatality does not decrease the fight, does not make life less lived, and does not end all hope. In my mind it increases all of those things a million times, because all cards are on the table.
ETA: I find it a pretty sad commentary that this CF mom blocked me from following her site. It won't start me from voicing my opinion and the damage that has occurred from not being very frank about the realities of CF.
Wednesday, January 27, 2010
Ginger
Today Ginger was supposed to turn 29. Instead, her young son and devoted husband spend their first January 27th without her.
By all measures, Ginger was healthier than I was. Higher lung function, better weight, and less harmful bacteria. We chatted often at http://www.cf2chat.com and I loved her humor and light. On my list of things to do while visiting the inlaws in South Carolina was to meet Ginger.
Then she got the swine flu...
and it was too great of a challenge for her CF lungs. Her death really shook me. It was one in a string of deaths this fall, but her decline was so quick, so head-spinning quick, that it really felt like it came completely out of nowhere, even though she did struggle for quite awhile.
On another note, it's quickly approaching a year since Jenn died. A year since I talked to my wonderful, beautiful, amazing friend. We may have never met in person, but I still count her amongst my closest of friends, and I know that she would do the same for me. The pain of her not being her is not as sharp. Slowly I'm able to feel more like the old Talana. It's hard for me to reconcile how deeply these people I've never met, affect me, my soul, and truly add to my life.
By all measures, Ginger was healthier than I was. Higher lung function, better weight, and less harmful bacteria. We chatted often at http://www.cf2chat.com and I loved her humor and light. On my list of things to do while visiting the inlaws in South Carolina was to meet Ginger.
Then she got the swine flu...
and it was too great of a challenge for her CF lungs. Her death really shook me. It was one in a string of deaths this fall, but her decline was so quick, so head-spinning quick, that it really felt like it came completely out of nowhere, even though she did struggle for quite awhile.
On another note, it's quickly approaching a year since Jenn died. A year since I talked to my wonderful, beautiful, amazing friend. We may have never met in person, but I still count her amongst my closest of friends, and I know that she would do the same for me. The pain of her not being her is not as sharp. Slowly I'm able to feel more like the old Talana. It's hard for me to reconcile how deeply these people I've never met, affect me, my soul, and truly add to my life.
Wednesday, January 13, 2010
New Clinic
I had my first visit today with the Las Vegas clinic... something major for me, since I've never seen anyone for my CF except for the doctors at OHSU. First impressions? I'm in good hands. It was a long visit, but I talked to the nutritionist, social worker, nurse, RT, and doctor.
The waiting room was a little scary... the clinic is located near where Vegas starts to turn scary... the area that any large city has. My Portland clinic is far from this area, and Eugene isn't big enough for an area like that, so it was a change to be sure... but once back in the clinic (though I do have to say the check in people were very nice), it was made of awesome.
I was called back into the clinic area, when I got the good ol weight... still sucky... 104 lbs, leaving me with a BMI a hair over 18. My o2 sat (the amount of blood cells that are saturated with oxygen) was 96%, which was surprisingly good for being at the higher elevation of Vegas and with as coughy as I've been lately.
Then I talked through my CF with the nurse... then time for my PFTs. Given how junky my lungs have been, I didn't hold out much hope. Yet, I saw the best numbers I've seen since May, and the third highest I've had in 2+ years. WOOO HOOO! Even though this clinic uses a different predictor model, even my raw numbers were up. Hello FEV1 of 38%.
Then more meeting of people, more talking, more seeing where we needed to go. They were encouraged that I am seemingly stable. Concerned about my problems with malaborbtion, despite being on a very high enzyme dose. So, to address it, I'm trying one week on the newest enzyme, Zenpep, to see if it makes a difference. I'm also going on a course of cipro to address some low lying infection issues, as well as trying singular for SOB issues.
Also on tap is getting my yearly bone scan and doing yet another night time o2 study to see if I need it!
The waiting room was a little scary... the clinic is located near where Vegas starts to turn scary... the area that any large city has. My Portland clinic is far from this area, and Eugene isn't big enough for an area like that, so it was a change to be sure... but once back in the clinic (though I do have to say the check in people were very nice), it was made of awesome.
I was called back into the clinic area, when I got the good ol weight... still sucky... 104 lbs, leaving me with a BMI a hair over 18. My o2 sat (the amount of blood cells that are saturated with oxygen) was 96%, which was surprisingly good for being at the higher elevation of Vegas and with as coughy as I've been lately.
Then I talked through my CF with the nurse... then time for my PFTs. Given how junky my lungs have been, I didn't hold out much hope. Yet, I saw the best numbers I've seen since May, and the third highest I've had in 2+ years. WOOO HOOO! Even though this clinic uses a different predictor model, even my raw numbers were up. Hello FEV1 of 38%.
Then more meeting of people, more talking, more seeing where we needed to go. They were encouraged that I am seemingly stable. Concerned about my problems with malaborbtion, despite being on a very high enzyme dose. So, to address it, I'm trying one week on the newest enzyme, Zenpep, to see if it makes a difference. I'm also going on a course of cipro to address some low lying infection issues, as well as trying singular for SOB issues.
Also on tap is getting my yearly bone scan and doing yet another night time o2 study to see if I need it!
Saturday, January 9, 2010
You may think less of me, but this is what I think...
My friend Sarah, posted a link to this blog written by a breast cancer survivor about the recent meme that has swept through facebook. The one where women post their bra color in the name of cancer awareness. I participated (bright blue byt the way), but like many things on facebook that are the definition of "flash in a pan", I didn't really think that it would raise much awareness about breast cancer. But, of course, with anything, people are sensitive to it.
The blogger wrote about feeling left out from this meme, that was to raise awareness about her own disease. How it's insensitive to those that have lost their breasts to cancer, because they have no bra to wear. How life is radically changed for them because of the lack of boobs. Part of me feels for them, but a even louder part of me says "Boohoo". Why this shocking lack of compassion, from me? Because I would give up my hair, my breasts, even a leg to have a chance at being cured. But it's not that simple with CF. You can live without boobs. You can live without hair, get by without legs. You can't live without lungs.
Yes, cancer is tough. Chemo, radiation, surgery, and a radical jump from normal life into the world of the sick. You are guaranteed nothing about the outcome, only sure that the journey will be twisty. It's the path that I and all my CF friends walk every day... however, we all know where our journey's outcome will be... death by CF if something else doesn't get us first. Even with secondary cancers, a loss of normal functionality, and a number of other complications, it's not all or nothing with cancer.
Then as these thoughts, these emotions of "I would kill to be able to walk your journey for a cure", I feel horrible for lessening the suffering of another human being. For thinking that they just need to get over their lack of boobs because they are alive. Guess what, clothes don't fit? Oh well, you are alive to wear those clothes! Get funny looks in public because you don't fill out your top, or your hair is only an inch long after chemo... you know why, and you can be proud that you can be out in public. I'm not saying that the blogger in question, or any cancer survivor that is alive isn't absolutely grateful to be alive, but complaints about cosmetic issues that are the sole reason that they are alive really, really hurts me. Because I can't go down and have a body part removed to be healthy. Right now, I'm locked into a life that I will slowly get sicker and sicker. Until I need a lung transplant... where I am waiting on someone else to die... so I can throw my own Hail Mary at life. One, just like any cancer surgery, does not have a guaranteed outcome. But unlike a cancer surviver who gets the label of "cure" after 5 years of no evidence of disease, a lung transplant patient has a 50% chance of being dead at 5 years. If you are alive, you still take handfuls of pills a day, still have to be afraid of every germ that comes your way, and get regular scans to see if the very drugs that are saving your life may have caused cancer. How's that for irony?
I want to shake myself and day "get over it Talana"... at the same time wanting to shake these women that are alive and say "get over it, you're alive"!
Or every year, during childhood cancer awareness, it is common for people to post that cancer kills more than a number of other diseases combined... CF being on that list. I want to vomit every time I read that. Vomit at kids being lost at a cruel killer... vomit at the fact that these kids have a chance at a cure, when CF kids don't, so why are we even equating them. That they deserve more awareness because there are more children dying of cancer? A child dying of anything is not okay. Saying that you deserve a cure because it kills more, at the cost of a list of other diseases? The logical part of me knows that probably isn't what they are saying... but the emotional knee-jerk side callously says "I'd take a child sick with cancer over one with a 100% death sentence." And then I vomit on myself a little for thinking that.
So maybe I should make my own meme... what color of mucus are you coughing up today... post the color in your status for CF awareness... (pea soup green), though it may be insensitive to my CF friends who have new lungs, who don't deal with mucus anymore, but still have CF, but hey, I don't think they'll care that much.
The blogger wrote about feeling left out from this meme, that was to raise awareness about her own disease. How it's insensitive to those that have lost their breasts to cancer, because they have no bra to wear. How life is radically changed for them because of the lack of boobs. Part of me feels for them, but a even louder part of me says "Boohoo". Why this shocking lack of compassion, from me? Because I would give up my hair, my breasts, even a leg to have a chance at being cured. But it's not that simple with CF. You can live without boobs. You can live without hair, get by without legs. You can't live without lungs.
Yes, cancer is tough. Chemo, radiation, surgery, and a radical jump from normal life into the world of the sick. You are guaranteed nothing about the outcome, only sure that the journey will be twisty. It's the path that I and all my CF friends walk every day... however, we all know where our journey's outcome will be... death by CF if something else doesn't get us first. Even with secondary cancers, a loss of normal functionality, and a number of other complications, it's not all or nothing with cancer.
Then as these thoughts, these emotions of "I would kill to be able to walk your journey for a cure", I feel horrible for lessening the suffering of another human being. For thinking that they just need to get over their lack of boobs because they are alive. Guess what, clothes don't fit? Oh well, you are alive to wear those clothes! Get funny looks in public because you don't fill out your top, or your hair is only an inch long after chemo... you know why, and you can be proud that you can be out in public. I'm not saying that the blogger in question, or any cancer survivor that is alive isn't absolutely grateful to be alive, but complaints about cosmetic issues that are the sole reason that they are alive really, really hurts me. Because I can't go down and have a body part removed to be healthy. Right now, I'm locked into a life that I will slowly get sicker and sicker. Until I need a lung transplant... where I am waiting on someone else to die... so I can throw my own Hail Mary at life. One, just like any cancer surgery, does not have a guaranteed outcome. But unlike a cancer surviver who gets the label of "cure" after 5 years of no evidence of disease, a lung transplant patient has a 50% chance of being dead at 5 years. If you are alive, you still take handfuls of pills a day, still have to be afraid of every germ that comes your way, and get regular scans to see if the very drugs that are saving your life may have caused cancer. How's that for irony?
I want to shake myself and day "get over it Talana"... at the same time wanting to shake these women that are alive and say "get over it, you're alive"!
Or every year, during childhood cancer awareness, it is common for people to post that cancer kills more than a number of other diseases combined... CF being on that list. I want to vomit every time I read that. Vomit at kids being lost at a cruel killer... vomit at the fact that these kids have a chance at a cure, when CF kids don't, so why are we even equating them. That they deserve more awareness because there are more children dying of cancer? A child dying of anything is not okay. Saying that you deserve a cure because it kills more, at the cost of a list of other diseases? The logical part of me knows that probably isn't what they are saying... but the emotional knee-jerk side callously says "I'd take a child sick with cancer over one with a 100% death sentence." And then I vomit on myself a little for thinking that.
So maybe I should make my own meme... what color of mucus are you coughing up today... post the color in your status for CF awareness... (pea soup green), though it may be insensitive to my CF friends who have new lungs, who don't deal with mucus anymore, but still have CF, but hey, I don't think they'll care that much.
Wednesday, December 9, 2009
It's been awhile...
a hard while.
Several friends have died of CF. Close friends... ones that I'm not sure I am even ready to process their passing, and am frightened about my own well being... one was even healthier than me... before she came down with H1N1. Each deserve their own words, when I am ready... and tonight I am ready to give words to Paul Mooney, lovingly known as Q.
Q helped me earn back confidence as a writer. As somebody who actually knew the English language. In college, I has a professor who basically destroyed any confidence I had in writing and a good chunk of my self worth.
Q, as the gifted writer that we know him to be, helped me rediscover the writer that I was before that professor. The girl, who while may not always have pitch perfect grammar and spelling, is able to turn a phrase in an unexpected way, bring home a point, and find a unique voice among common words.
The fact that Q, as this gifted writer, and a professor in his own right, valued and sought out my opinion about issues related to writing... I don't have the words to really express what that meant to me.
Thank you Q, for making me feel like I had some worth... I may even be able to finish that book, in your hono
Several friends have died of CF. Close friends... ones that I'm not sure I am even ready to process their passing, and am frightened about my own well being... one was even healthier than me... before she came down with H1N1. Each deserve their own words, when I am ready... and tonight I am ready to give words to Paul Mooney, lovingly known as Q.
Q helped me earn back confidence as a writer. As somebody who actually knew the English language. In college, I has a professor who basically destroyed any confidence I had in writing and a good chunk of my self worth.
Q, as the gifted writer that we know him to be, helped me rediscover the writer that I was before that professor. The girl, who while may not always have pitch perfect grammar and spelling, is able to turn a phrase in an unexpected way, bring home a point, and find a unique voice among common words.
The fact that Q, as this gifted writer, and a professor in his own right, valued and sought out my opinion about issues related to writing... I don't have the words to really express what that meant to me.
Thank you Q, for making me feel like I had some worth... I may even be able to finish that book, in your hono
Thursday, November 12, 2009
Wednesday, November 11, 2009
Please pray for my Eva tonight... she's in the hospital, not able to breathe... she needs new lungs. 2 year post transplant they are failing her. This girl means the world to me... below is Jess, Eva, and I at the Vancouver premier of the documentary about her transplant 65_Red Roses.
Tuesday, November 10, 2009
Thursday, November 5, 2009
CF Sucks
Already this month we've lost two in the CF community... two... and we're barely 5 days in.
Will's journey is one that I've been following for some time. He desperately needed lungs and received them over a year ago. Sadly, his body never really took well to them. He spent months on the vent, clinging to life, lost most of his sight, and also had severe kidney damage in the process. But rather than quitting, he kept fighting. He made it off that vent. He made it home. He made it to basketball games, his love, and he got to cuddle his sweet niece. And then today, he's gone. Nothing was easy for him, but I've learned so much through is blog about living to the best that you can with what you have. Will showed that tenfold.
Lauren was someone who was very involved in the CF forums, using her voice to offer encouragement, faith, and knowledge to other cystics. Her and her husband were an amazing example of a relationship that worked with all of the hassles of CF.
There are also so many that are so desperately sick right now that need prayers. One of my dear chat friends is on the vent, another is in the hospital with high fevers, and so many others are struggling with complications... it just freaking sucks.
Will's journey is one that I've been following for some time. He desperately needed lungs and received them over a year ago. Sadly, his body never really took well to them. He spent months on the vent, clinging to life, lost most of his sight, and also had severe kidney damage in the process. But rather than quitting, he kept fighting. He made it off that vent. He made it home. He made it to basketball games, his love, and he got to cuddle his sweet niece. And then today, he's gone. Nothing was easy for him, but I've learned so much through is blog about living to the best that you can with what you have. Will showed that tenfold.
Lauren was someone who was very involved in the CF forums, using her voice to offer encouragement, faith, and knowledge to other cystics. Her and her husband were an amazing example of a relationship that worked with all of the hassles of CF.
There are also so many that are so desperately sick right now that need prayers. One of my dear chat friends is on the vent, another is in the hospital with high fevers, and so many others are struggling with complications... it just freaking sucks.
Wednesday, November 4, 2009
H1N1 Shot!
So I missed yesterday... I chose to believe that the 3rd of November never existed.
Today, I had an adventure... I went to my local H1N1 shot clinic!
The county health department was offering shots for high risk groups at local schools this week. Knowing that we have MANY CFers very sick with H1N1 and some that have even lost their battle, I really wanted to get my shot ASAP. The clinic at the high school a mile down the road was open from 2-5. I showed up at noon... and was already about 70 people back in line.
I took my seat, between two parents getting shots for their asthmatic kids. I sat, played on my iphone, knitted (to which I was asked if I was doing needlepoint, ah men), and talked some with those around me.
Then some county health officials went down the line and asked why you needed the shot and handed out consent forms, based on if you were in the nasal mist category or the shot category. Cystics are the shot category, since even the weakened virus is not good for us.
I was hoping that if I had paperwork in hand, then I would be guaranteed a shot... but the county had a big debacle early this week because the city they were in gave out tickets, which the county didn't offer and they had people fighting over vaccine, so I took nothing for granted.
At a little after 2, after 2 hours in line, the line started moving forward. Those at the back of the line were turned away because they didn't have enough vaccine, as shown by they didn't have any more forms. Hope went up in me that I would get my shot.
Then slowly, slowly, slowly the line moved forward... finally I could see where they were giving the shot. I had to stand for forty five minutes, waiting for the backlog of people in front of me to clear, then I got screened again. Then in the line of screened people. We all were chatty here, where one old man gave me a line I think all us cystics should bother... "I have lungs like a parakeet!" It's so true... after a bit of chatting, then waiting... I GOT MY SHOT!
I'm proud to report I have not oinked yet.
So four hours,
Today, I had an adventure... I went to my local H1N1 shot clinic!
The county health department was offering shots for high risk groups at local schools this week. Knowing that we have MANY CFers very sick with H1N1 and some that have even lost their battle, I really wanted to get my shot ASAP. The clinic at the high school a mile down the road was open from 2-5. I showed up at noon... and was already about 70 people back in line.
I took my seat, between two parents getting shots for their asthmatic kids. I sat, played on my iphone, knitted (to which I was asked if I was doing needlepoint, ah men), and talked some with those around me.
Then some county health officials went down the line and asked why you needed the shot and handed out consent forms, based on if you were in the nasal mist category or the shot category. Cystics are the shot category, since even the weakened virus is not good for us.
I was hoping that if I had paperwork in hand, then I would be guaranteed a shot... but the county had a big debacle early this week because the city they were in gave out tickets, which the county didn't offer and they had people fighting over vaccine, so I took nothing for granted.
At a little after 2, after 2 hours in line, the line started moving forward. Those at the back of the line were turned away because they didn't have enough vaccine, as shown by they didn't have any more forms. Hope went up in me that I would get my shot.
Then slowly, slowly, slowly the line moved forward... finally I could see where they were giving the shot. I had to stand for forty five minutes, waiting for the backlog of people in front of me to clear, then I got screened again. Then in the line of screened people. We all were chatty here, where one old man gave me a line I think all us cystics should bother... "I have lungs like a parakeet!" It's so true... after a bit of chatting, then waiting... I GOT MY SHOT!
I'm proud to report I have not oinked yet.
So four hours,
Monday, November 2, 2009
New Kitten
One of the many things to happen during my neglect of the blog was finding a new and wonderful little kitten!
Our house backs up on a small green way that is a city park. We noticed this summer that a very small kitten was coming out of the park into our backyard. She was terrified of us, but also very curious about us humans, and would sometimes show off, playfully flirting from the safe distance of 20 feet away, then 15 feet, then 10. Through about three weeks, she slowly trusted being around us more, until she was coming up on our porch to eat the dry food we provided. Matt worked very hard with her to gain her trust, and slowly but surely, we finally were able to touch her. Around this time, she started limping very badly... and a pack of raccoons was stalking our porch at night, so we scooped her up and brought her inside. To say that she loves her new life would be an understatement. She loves cuddling with us, playing fetch, and just living life. She has an endless fascination with human food, and is unafraid to try any new taste... going as far as trying to steal white chocolate from my purse, popcorn from my bowl, and cheetos from the bag... all of which rank high on her list of best foods in the world.
Our house backs up on a small green way that is a city park. We noticed this summer that a very small kitten was coming out of the park into our backyard. She was terrified of us, but also very curious about us humans, and would sometimes show off, playfully flirting from the safe distance of 20 feet away, then 15 feet, then 10. Through about three weeks, she slowly trusted being around us more, until she was coming up on our porch to eat the dry food we provided. Matt worked very hard with her to gain her trust, and slowly but surely, we finally were able to touch her. Around this time, she started limping very badly... and a pack of raccoons was stalking our porch at night, so we scooped her up and brought her inside. To say that she loves her new life would be an understatement. She loves cuddling with us, playing fetch, and just living life. She has an endless fascination with human food, and is unafraid to try any new taste... going as far as trying to steal white chocolate from my purse, popcorn from my bowl, and cheetos from the bag... all of which rank high on her list of best foods in the world.
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