This week my husband and I had a little get away. We went about an hour and a half Northeast to a historic old town to spend some time in nature just the two of us- child free! I was excited to get a little alone time with my husband before school starts and we thought of it as an early anniversary vacation (we have our 7 year wedding anniversary early next month). My only little concern was that we would 2,500 feet higher in elevation than we currently live (which is essentially sea level) and I was a little concerned with how my lung would handle the elevation. We figured we would give it a shot and if it was a little too high our hiking and nature weekend would end up being a laying around and relaxing weekend.
As my GPS notified us that our hotel was quickly approaching I realized that the car was going up a steep hill. As the car drove higher and higher I started to get worried. We live in a valley so our landscape is as flat as a landscape can be and I just wasn't sure if the hills in this town would make walking a challenge. We heard the town we were visiting wasn't known for good parking and that our best bet was to walk into town for restaurants. Would my lungs be able to handle these steep hills at a higher elevation? I figured there was nothing we could do about it at this point so we hoped for the best.
When we checked into our hotel we realized our room was on the second floor up a very steep and curvy set of stairs. Stairs still give me a touch of anxiety because for a long time I just physically could not climb a flight of stairs. When I was sick for a couple years I would have to climb stairs on all fours because I did not have the lung power to walk them like a normal person. Needless to say stairs bring back bad memories. Again, I was wondering how I was going to make it through this vacation.
All of these secret little fears ended up being fruitless. I handled the hills and the stairs like a champ! Sure, I may have been a little more winded than the normal person, but I also only have 1/3 of the lung function that a normal person has. The entire trip I did not need to stop and rest on the hills or the stairs and we walked a ton of hills! And even more amazing I survived a hike that was a straight downward hill that I would old never have even attempted a few years ago in fear that I would never make it back up the hill. Sure we walked back up the hill very slowly. But my husband was so patient and wouldn't let me get frustrated with how often I needed to rest. He even carried me on his back for a little to give me a rest (although I really didn't need the help it was a nice little rest).
As we were driving back home I couldn't help, but be in awe with my body. I was able to do so much and my CF hardly got in the way of our vacation (those darn treatments are always such a pain on vacation because we can't just get up and go) and I could hardly believe I was the same person I was a few years ago. It also made me realize once again lung function is just a number. I have been hovering in the low 30s for a few years now, but what I am able to do now vs a few years ago is extremely different! I have a feeling consistently swimming has helped condition my lungs and body so that I am able to much more with my little 33(ish)% now than I was even a year ago!
I know this newfound amazement may vanish with the next cold or exacerbation, but for now I am reveling in a body that has dealt with so very much and still seems to power through!
Showing posts with label CF Treatments. Show all posts
Showing posts with label CF Treatments. Show all posts
Friday, August 18, 2017
Saturday, August 12, 2017
Race Against Time
Hopefully, you have been hearing some really exciting news regarding Cystic Fibrosis and medicine in general lately. Science is beyond amazing and even my pessimistic side that is adamant that I will never see a cure for CF in my lifetime is starting to fade. And I am certain that young children with CF will never understand what the disease was like for us older CFers and that is an amazing thing!
There is a part of me though that has to hold my breath or swallow my excitement. The newest medications for CF are still years away and even though these very well could stop CF progression in it's tracks I can't help, but worry these meds may come just a little too late. I have pseudomonas, I have scarring and I have a disease that has progressed a lot in my 33 years. I wonder if I will still have these lungs by the time these medications come along. I lost a few friends right before Orkambi became available and know even more that were transplanted before being able to try any of Vertex's meds. I really hope that I can at least try some of these third generation drugs and I hope that I will be around long enough to see them come to market.
Sometimes life with CF can make looking into the future a daunting task. Thinking how hard my lungs have worked and how hard this disease has worked towards destroying my body in the past 33 years it can make the future seem bleak at best. With all this scarring and bacteria how can I fight against CF long term? Despite doing everything my doctors ask of me plus more I still see my lungs struggle just to keep up with this ever growing army of bacteria. The future looks long and treacherous. Thinking long term is frightening and exhausting at the same time. Realistically, given what is available today I can't imagine keeping these lungs long enough to see old agr.
Hearing about these new medical advances in CF allows me to make mini goals to reach for along the way to old agee. They have become a mental rest stop along the way. Maybe I can fight this battle for 5 more years and then I will get these meds to help allieviate my exhausted body from this raging war. Yes, 5 years sounds so much easier than "forever" and I can wrap my mind around making it just 5 more years. It makes the future less exhausting, unachievable and scary. If I keep up this all consuming battle for just a few more year back up will arrive and the long term fight may be a bit more feasible.
There are never any guarantees for tomorrow and this is even more true when you have a progressive disease. I know I may not gain as much as healthier CFers from these medication, but more than anything I just want the chance to try. A chance to live to see old age even if these lungs don't improve. I can manage a pretty nice life with these scarred and battered lungs. For now, I am doing everything in my power to be here as long as possible and a goal of 5 years actually feels doable. So I wake up each morning and I swim and I do all my treatments and I take a few supplements on the side. And I feel I have enough reserves for the next few years. Let's hope Science can meet me half way!
There is a part of me though that has to hold my breath or swallow my excitement. The newest medications for CF are still years away and even though these very well could stop CF progression in it's tracks I can't help, but worry these meds may come just a little too late. I have pseudomonas, I have scarring and I have a disease that has progressed a lot in my 33 years. I wonder if I will still have these lungs by the time these medications come along. I lost a few friends right before Orkambi became available and know even more that were transplanted before being able to try any of Vertex's meds. I really hope that I can at least try some of these third generation drugs and I hope that I will be around long enough to see them come to market.
Sometimes life with CF can make looking into the future a daunting task. Thinking how hard my lungs have worked and how hard this disease has worked towards destroying my body in the past 33 years it can make the future seem bleak at best. With all this scarring and bacteria how can I fight against CF long term? Despite doing everything my doctors ask of me plus more I still see my lungs struggle just to keep up with this ever growing army of bacteria. The future looks long and treacherous. Thinking long term is frightening and exhausting at the same time. Realistically, given what is available today I can't imagine keeping these lungs long enough to see old agr.
Hearing about these new medical advances in CF allows me to make mini goals to reach for along the way to old agee. They have become a mental rest stop along the way. Maybe I can fight this battle for 5 more years and then I will get these meds to help allieviate my exhausted body from this raging war. Yes, 5 years sounds so much easier than "forever" and I can wrap my mind around making it just 5 more years. It makes the future less exhausting, unachievable and scary. If I keep up this all consuming battle for just a few more year back up will arrive and the long term fight may be a bit more feasible.
There are never any guarantees for tomorrow and this is even more true when you have a progressive disease. I know I may not gain as much as healthier CFers from these medication, but more than anything I just want the chance to try. A chance to live to see old age even if these lungs don't improve. I can manage a pretty nice life with these scarred and battered lungs. For now, I am doing everything in my power to be here as long as possible and a goal of 5 years actually feels doable. So I wake up each morning and I swim and I do all my treatments and I take a few supplements on the side. And I feel I have enough reserves for the next few years. Let's hope Science can meet me half way!
Wednesday, June 3, 2015
Orkambi
As most of the CF world is probably aware of by now, the vertex drug developed for DDF508 has a good chance of becoming available to patients this July. Everyone in the CF community was hopeful this drug targeting DDF508 would be a life changing miracle drug just like Kalydeco was for people with the G551D mutation. Unfortunately, the results of the study quickly dashed many of our dreams that this drug would be our miracle drug.
As much as I am disappointed that Orkambi, which will work on my mutation, is not the life changing and life extending drug that Kalydeco is for a select few with CF. I can say I am beyond excited, despite having all the facts, that we may have another medication that could potentially help slow the progression of my disease. When you live with a progressive disease new treatments are never developed fast enough. In fact, discoveries to treat CF are far and few between. And even when therapies are developed I have found myself allergic and unable to take advantage of many of these medications and treatments. The progression of the disease is always three steps ahead of the treatment and watching your lungs and body deteriorate is heartbreaking at best. It development of treatments are very much a matter life or death for so many with CF. This is why I have to roll my eyes at the naysayers that complain about the humble 3% increase in lung function that were seen in the Orkambi study.
What the naysayers don't realize is that 3% may not seem clinically significant, the truth is that the drug is so much more than 3% increase (on average) in lung function. It is the fact that is can slow the guaranteed progression of this disease. That is something that can not be taken lightly. To me, it means I may have a few more years added to the end of my life to watch my daughter turn into a woman. It may mean one or two more anniversaries I spend with my husband. It may mean another birthday and a few more grey hairs. So yes, 3% may not seem like a big deal to someone who hasn't had an expiration date stamped to their lungs. It may not seem like 3% could change a life, but pessimists are stuck on a low percentage and not the potential for what slowing, even minutely, can do to a life. How a few years can mean so much to a mother, a wife, a sister, a friend who would do anything to hold on to their life for just a little longer.
So yes, lets celebrate the accomplishment of the researchers, the foundation, the CF community that we may (as long as the FDA gives the okay this July) have one more tool in our fight again CF, we may have a little more hope for tomorrow, and we may have a little more time on this Earth.
As much as I am disappointed that Orkambi, which will work on my mutation, is not the life changing and life extending drug that Kalydeco is for a select few with CF. I can say I am beyond excited, despite having all the facts, that we may have another medication that could potentially help slow the progression of my disease. When you live with a progressive disease new treatments are never developed fast enough. In fact, discoveries to treat CF are far and few between. And even when therapies are developed I have found myself allergic and unable to take advantage of many of these medications and treatments. The progression of the disease is always three steps ahead of the treatment and watching your lungs and body deteriorate is heartbreaking at best. It development of treatments are very much a matter life or death for so many with CF. This is why I have to roll my eyes at the naysayers that complain about the humble 3% increase in lung function that were seen in the Orkambi study.
What the naysayers don't realize is that 3% may not seem clinically significant, the truth is that the drug is so much more than 3% increase (on average) in lung function. It is the fact that is can slow the guaranteed progression of this disease. That is something that can not be taken lightly. To me, it means I may have a few more years added to the end of my life to watch my daughter turn into a woman. It may mean one or two more anniversaries I spend with my husband. It may mean another birthday and a few more grey hairs. So yes, 3% may not seem like a big deal to someone who hasn't had an expiration date stamped to their lungs. It may not seem like 3% could change a life, but pessimists are stuck on a low percentage and not the potential for what slowing, even minutely, can do to a life. How a few years can mean so much to a mother, a wife, a sister, a friend who would do anything to hold on to their life for just a little longer.
So yes, lets celebrate the accomplishment of the researchers, the foundation, the CF community that we may (as long as the FDA gives the okay this July) have one more tool in our fight again CF, we may have a little more hope for tomorrow, and we may have a little more time on this Earth.
Saturday, May 24, 2014
The Right Direction?
I am not superstitious, I really am not. And yet, I feel nervous writing this in case I jinx myself. In case, by writing these words for others to read it will make me unworthy of what is happening and everything will vanish as mysteriously as it came. But as much as I am currently doubting it, I am in fact, not superstitious so here it goes.
There has been a shift. A subtle shift. It is not that my breathing is necessarily any easier and I am not sure if my lung function increased at all, but there seems to be a difference in the way I feel each day. I am noticing I am doing so much more throughout the day and not feeling like I want to fall into bed long before my daughter is tucked into bed.
I can function like a human being again. I can make it through more than one outing without feeling like all of my energy is completely drained. I feel like I am slowly crawling away from deaths door, because really I was hardly living a life anymore. Not that I was deathly ill all the time, but it seemed that when I was "better" I wasn't my old self and it would only last a week at most before I felt horrific, completely useless.
Today for example, I ended up taking a nap for about 40 minutes. However, this nap allowed me to have enough energy to work in the garden, make homemade pesto and homemade ice tea (using herbs from our garden for both), and homemade mounds bars for dessert. I then did the dishes, washed the windows, vacuumed the whole house, wrote this blog and did my nails. And you know what? I am still standing and don't feel exhausted yet. A month ago, I would need a nap and still not be feeling well enough to do much all day besides caring for my little one.
I am also realizing why I may have been so sick. I feel like we, the doctors and I, were baffled at why I couldn't get better. I think there were some obvious issues like my immune system and body still recovering from the flu which resulted in continuous colds and illness. My body was repeatedly getting knocked down. However, I am almost positive I had an infection deep in a pocket of my lungs where mucus is completely trapped. The fevers were an obvious sign of infection, but oddly enough my mucus was thin and light in color so I never felt like I actually had a respiratory infection. I would feel better after abx (although my mucus already looked "good" so it never seemed to change much), but I would seem to fall sick again almost immediately with a cold that would result in a fever. I think I wasn't being treated long enough for how bad the hidden infection was, but since I had none of my usual obvious signs of respiratory infection we never thought to keep extending the abx. My increased airway clearance and nebs weren't touching the area of my lungs that were infected so they weren't making a difference.
This last appointment, I asked to stay on my meds (Levaqui and Bactrim) for 3 weeks instead of my usual two since it seemed that I would just start to feel "better" when my meds would end. I also started to worry about the lung pain I kept feeling on my left side which seemed to be a sign of infection. I think the 3 weeks of antibiotics plus the added weight gain is what may have finally given my body a fighting chance.
Like I said, I can tell my lungs aren't even close to where they used to be and I know it will be a long road ahead, but at least for now I feel like I can live my life the way I am supposed to with my amazing little girl and my wonderful husband. I can enjoy the daily aspects of life again and what could be better than that!
There has been a shift. A subtle shift. It is not that my breathing is necessarily any easier and I am not sure if my lung function increased at all, but there seems to be a difference in the way I feel each day. I am noticing I am doing so much more throughout the day and not feeling like I want to fall into bed long before my daughter is tucked into bed.
I can function like a human being again. I can make it through more than one outing without feeling like all of my energy is completely drained. I feel like I am slowly crawling away from deaths door, because really I was hardly living a life anymore. Not that I was deathly ill all the time, but it seemed that when I was "better" I wasn't my old self and it would only last a week at most before I felt horrific, completely useless.
Today for example, I ended up taking a nap for about 40 minutes. However, this nap allowed me to have enough energy to work in the garden, make homemade pesto and homemade ice tea (using herbs from our garden for both), and homemade mounds bars for dessert. I then did the dishes, washed the windows, vacuumed the whole house, wrote this blog and did my nails. And you know what? I am still standing and don't feel exhausted yet. A month ago, I would need a nap and still not be feeling well enough to do much all day besides caring for my little one.
I am also realizing why I may have been so sick. I feel like we, the doctors and I, were baffled at why I couldn't get better. I think there were some obvious issues like my immune system and body still recovering from the flu which resulted in continuous colds and illness. My body was repeatedly getting knocked down. However, I am almost positive I had an infection deep in a pocket of my lungs where mucus is completely trapped. The fevers were an obvious sign of infection, but oddly enough my mucus was thin and light in color so I never felt like I actually had a respiratory infection. I would feel better after abx (although my mucus already looked "good" so it never seemed to change much), but I would seem to fall sick again almost immediately with a cold that would result in a fever. I think I wasn't being treated long enough for how bad the hidden infection was, but since I had none of my usual obvious signs of respiratory infection we never thought to keep extending the abx. My increased airway clearance and nebs weren't touching the area of my lungs that were infected so they weren't making a difference.
This last appointment, I asked to stay on my meds (Levaqui and Bactrim) for 3 weeks instead of my usual two since it seemed that I would just start to feel "better" when my meds would end. I also started to worry about the lung pain I kept feeling on my left side which seemed to be a sign of infection. I think the 3 weeks of antibiotics plus the added weight gain is what may have finally given my body a fighting chance.
Like I said, I can tell my lungs aren't even close to where they used to be and I know it will be a long road ahead, but at least for now I feel like I can live my life the way I am supposed to with my amazing little girl and my wonderful husband. I can enjoy the daily aspects of life again and what could be better than that!
Thursday, May 1, 2014
Down The Rabbit Hole I Go
I have found myself in a place that makes no sense at all. It all seems to get "curiouser and curiouser" in the worst kind of way.
Last Monday, I went to clinic. When it was time to see my doctor (I usually see one of the two) both doctors came in to talk to me. I knew right then that things couldn't be good. You don't get two specialists sitting in your room if things are going well. My numbers dropped again. I am now dancing in the 20s. The 20s are a wonderful number when it refers to your age, not so much when it is your lung function. The problem is nothing makes sense and nobody knows why. Let me show you what I mean:
After getting super sick and losing a ton of lung function from the flu I had several rounds of IVs where my lung function went up slightly, but I could never get them out of the 30s which is far lower than my (old?) baseline of 50. So after feeling like IVs and increased CPT wasn't getting me anywhere I decided go get more proactive and here are the results:
Hospital stay = 4% drop in PFTs
Increase CPT to 4x/day everyday for a few months (and going) = 1% drop in PFTs
Go on steroids = 4% drop in PFTs
And so the harder I try the further I fall. The doctors said multiple times that with everything I am doing we should see some improvement and at the very least I should be holding steady. I have no new bugs and the ones I do have are not resistant to anything, I am 100% compliant and do CPT 4x/day everyday. I don't have fungus. I am treating my Psuedo with Cayston and currently on oral abx as well.
We decided to try one last ditch effort. I am going on an appetite stimulant. I keep losing weight with lung function and even though the dietitian was very happy with my food log I was quick to admit that I eat well only when I am well. When I get sick or fevers (at least once a month and often for a week or more at a time) I just can't find the energy to eat enough. We know there is a correlation between weight and lung function. We hope if I can regain my weight my body will be stronger and more able to heal or fight off germs.
We added a few other changes as well, but the main focus is weight gain and exercise (to build muscle and lung strength). It is interesting that in yoga last night the set was dedicated to building courage and facing the impossible. It felt appropriate given the feat I have ahead.
Last Monday, I went to clinic. When it was time to see my doctor (I usually see one of the two) both doctors came in to talk to me. I knew right then that things couldn't be good. You don't get two specialists sitting in your room if things are going well. My numbers dropped again. I am now dancing in the 20s. The 20s are a wonderful number when it refers to your age, not so much when it is your lung function. The problem is nothing makes sense and nobody knows why. Let me show you what I mean:
After getting super sick and losing a ton of lung function from the flu I had several rounds of IVs where my lung function went up slightly, but I could never get them out of the 30s which is far lower than my (old?) baseline of 50. So after feeling like IVs and increased CPT wasn't getting me anywhere I decided go get more proactive and here are the results:
Hospital stay = 4% drop in PFTs
Increase CPT to 4x/day everyday for a few months (and going) = 1% drop in PFTs
Go on steroids = 4% drop in PFTs
And so the harder I try the further I fall. The doctors said multiple times that with everything I am doing we should see some improvement and at the very least I should be holding steady. I have no new bugs and the ones I do have are not resistant to anything, I am 100% compliant and do CPT 4x/day everyday. I don't have fungus. I am treating my Psuedo with Cayston and currently on oral abx as well.
We decided to try one last ditch effort. I am going on an appetite stimulant. I keep losing weight with lung function and even though the dietitian was very happy with my food log I was quick to admit that I eat well only when I am well. When I get sick or fevers (at least once a month and often for a week or more at a time) I just can't find the energy to eat enough. We know there is a correlation between weight and lung function. We hope if I can regain my weight my body will be stronger and more able to heal or fight off germs.
We added a few other changes as well, but the main focus is weight gain and exercise (to build muscle and lung strength). It is interesting that in yoga last night the set was dedicated to building courage and facing the impossible. It felt appropriate given the feat I have ahead.
Monday, March 24, 2014
Circus Act
Sometimes doing treatments with kids is like a circus act! My daughter is wildly independent in her play which makes treatment time so much easier than when she was little. She plays around the living room or goes outside (I can easily see her from where I do treatments). However, kids will be kids and there are days that I am pulling my hair out trying to get treatments done.
Today for example during one 30 minute Vest and neb cycle my sweet daughter:
Today for example during one 30 minute Vest and neb cycle my sweet daughter:
- Spilled water all down her dress and needed me to dry and change her clothes.
- Went pee on the potty so I had to wipe, dump pee in big potty, wash hands, and clap and cheer.
- Fell out of her chair while eating a snack and needed a "mama hug" and kisses.
- Went poop on the potty and needed me to help her wipe, dump, wash hands, and cheer.
- Finished her snack and asked for more banana adding a long, "pleeeease" at the end.
- Dropped a wooden block in her toddler potty and then cried because she didn't want to touch it because poo poo goes in the potty.
My thirty minute treatments quickly turned into an hour and a half! At least life is never boring with a toddler in the house!!
Monday, November 21, 2011
Pregnancy Meds
Disclaimer: I am in no way giving medical advice. I am not a medical doctor and have no medical knowledge other than what my doctors have told me. This is the interpretation of what I believe they told me and am not giving advice. Always talk to your own doctors before changing any of your medicines and always consult with a doc before getting pregnant with CF. Now that nobody will sue me on with my docs opinions of CF meds and pregnancy.
I know as cysters wanting to have babies our biggest question is what meds are safe during pregnancy, which meds can we stay on, and how will we survive without some of the meds!?! I am going to share with you the opinions of both my high risk OB and my CF doc. They had slightly different opinions which makes it a little confusing.
Prior to pregnancy I went to a high risk OB who looked over all my meds. My med list is as follows:
I know as cysters wanting to have babies our biggest question is what meds are safe during pregnancy, which meds can we stay on, and how will we survive without some of the meds!?! I am going to share with you the opinions of both my high risk OB and my CF doc. They had slightly different opinions which makes it a little confusing.
Prior to pregnancy I went to a high risk OB who looked over all my meds. My med list is as follows:
- Singulair (year round)
- Albuterol (2x/day via neb)
- Advair 500/50 (2x/day)
- Hypertonic Saline (2x/day)
- Pulmozyme (1x/day) I used to do 2, but I cut back recently
- Cayston (3x/day month on/month off)
- Azithromax (1x/day)
- Rhinoquart Aqua (2x/day)
- Enzymes (not a med, but whatever)
My high risk OB said all of my meds are fine to take during pregnancy. The Albuterol and Advair have the highest risk, but said she all her asthmatic patients are on them and it is more important for baby to get enough oxygen so she said it wasn't a problem. She said everything else was fine and that some were more that fine! HTS = salt water= perfectly safe. Enzymes= perfectly safe.
Fast forward to my first CF clinic while pregnant. My CF doc told me that although the high risk OB said everything was fine, he is slightly more conservative. He told me to stop Azithromax for the 1st trimester because he didn't see it having an immediate effect on my lungs. He said only use Singulair when needed, same with the nose spray. He also lowered my Advair to 250/50. Everything else was fine in his opinion.
Huh. This left me in a predicament. Which doc do I follow? I want to protect my little baby, but I am also afraid of getting sick and needing IVs which would be much more powerful meds than what I take now. I figured that the High risk OB has the baby's interest in mind and would not allow me to take something that they knew would be too dangerous (even though there are always risks, just some meds have higher risks than others). The CF doc has my interest in mind so if he made the changes and had my best interest in mind then I could listen to him and should still be healthy. For 3 weeks I stopped the allergy pills (but I usually get November allergies), I stopped Azithromax, and switched Advair with the lower dose prescription. This is what happened:
My allergies went crazy! I was so stuffy for 2 weeks that I could barely breath out of my nose, had post nasal drip which led to a morning cough and a sore throat. I was worried the post nasal drip and excessive mucus would effect my lungs. I decided to start the allergy pills again and the symptoms immediately disappeared. I figure after November I will try to get off them again because November and the spring are when my allergies are the worst. I feel okay with the lower dose Advair and will wait until my next clinic to see if my numbers are still doing okay. If they are I will stay on the low dose. Stopping Azithromax hasn't been a problem and I think I will wait until the baby is born to start again.
It is such a fine line between protecting your baby's exposure to meds in pregnancy and keeping yourself healthy enough to have a healthy baby. I knew parenting would be hard, but with CF the hard decisions start immediately after conception!
Although I am not on any of these meds I was told that Tobi is usually avoided during pregnancy and that meds like Cipro and Levaquin are not safe. There is a window of opportunity that my high risk OB said Bactrim is safe, but other times in pregnancy that it is considered dangerous. My doctor said that in the case of a flare up there are some safe IV meds. My high risk OB said that Prednisone can be used, but my CF doc refuses to allow me to ever go on Prednisone (pregnant or not). I know it is a ton of info, but I hope that it gives you a little insight as to what you may or may not be able to take during pregnancy.
Thursday, August 25, 2011
Potential New Drug for CF
Okay, so if all goes well it won't be ready until 2017. That just means we have to keep ourselves alive and well for another 6 years. I can put up with that. It is nice to see so many drugs in the pipeline that will hopefully make our lives longer and more enjoyable.
The article can be found here.
The article can be found here.
Friday, June 10, 2011
Stocks Fall After VX Press Release..So What?
Before I explain what this post is about I want to get one thing straight. I am not a hopeless optimist when it comes to CF cures/meds...in fact I am EXTREMELY hesitant when new developments come out because I do not want to disappoint myself by being overly optimistic.
So now to the post. I read that stocks dropped after the news release about the VX770 and VX809 (for cytics with Delta F508) and although it raises some concern I will explain to you why, the non-optimist, is still optimistic. Okay, stockholders were hoping for better outcomes even though the outcomes of this trial were not bad. I know stockholders goals differ from mine and so this is why I am not letting the drop in stocks deter me from being excited.
In my opinion as long as the results are somewhat positive I am stoked. Okay, say the VX drugs aren't THAT amazing for DF508 cystics, but they still have a positive effect on CFers. Is that something to whine about? No way!! If it helps add even 1 or 2 years to my life by very slightly slowing the decline in my health and allow me to have 1-2 more years with my handsome husband, my friends, and my family. I am all for it! Also, it is a PILL!!! So if something that takes 30 seconds to swallow (versus say 30 minutes to neb) I am an even HAPPIER camper!
Say worse case scenario. The drug just isn't showing enough scientific evidence to be worthwhile could we complain? Sure, but remember no matter what all this research is getting us closer to something that will work!!
In my opinion I do not need a cure. Would I want one? Yes, more than anything in the world. All I care about is that more and more meds will be available to allow CFers to live longer and longer. Maybe there won't be a magic bullet, but if a combination of meds/treatments would allow me to grow wrinkly and grey I would say that is enough for me.
So now to the post. I read that stocks dropped after the news release about the VX770 and VX809 (for cytics with Delta F508) and although it raises some concern I will explain to you why, the non-optimist, is still optimistic. Okay, stockholders were hoping for better outcomes even though the outcomes of this trial were not bad. I know stockholders goals differ from mine and so this is why I am not letting the drop in stocks deter me from being excited.
In my opinion as long as the results are somewhat positive I am stoked. Okay, say the VX drugs aren't THAT amazing for DF508 cystics, but they still have a positive effect on CFers. Is that something to whine about? No way!! If it helps add even 1 or 2 years to my life by very slightly slowing the decline in my health and allow me to have 1-2 more years with my handsome husband, my friends, and my family. I am all for it! Also, it is a PILL!!! So if something that takes 30 seconds to swallow (versus say 30 minutes to neb) I am an even HAPPIER camper!
Say worse case scenario. The drug just isn't showing enough scientific evidence to be worthwhile could we complain? Sure, but remember no matter what all this research is getting us closer to something that will work!!
In my opinion I do not need a cure. Would I want one? Yes, more than anything in the world. All I care about is that more and more meds will be available to allow CFers to live longer and longer. Maybe there won't be a magic bullet, but if a combination of meds/treatments would allow me to grow wrinkly and grey I would say that is enough for me.
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