I'm starting to think my Cyster Tara is on to something....a maintenance dose of prednisone might be a good idea.
I am tight. I am inflamed. I am spastic.
Oh, in my lungs :)
I'm short of breath with a lot of things. I get tired very easily. My lungs just all around hurt. But my mucus production is low. What I do cough up is light yellow to dark yellow. And I feel overall fine. No exacerbation in the works.
This all leads me to think that I just need something to control the inflammation that I am not getting from my anti-inflammatory meds - Singulair, Symbicort and Zithromax.
Hopefully when I see my doctor the first week of March she will agree with me. As of right now I can not take prednisone anyway (for reasons I can not discuss) so there is no point in calling her about it. I'm sticking with my 3 albuterol/atrovent treatments a day and trying to avoid the bitter cold as best as I can.
Wednesday, January 26, 2011
Thursday, January 20, 2011
Starting School!
I am so excited!!!! I started the grad school process (I think I blogged about it but I could be wrong) right before the new year, but found out shortly after I needed a few more history undergrad classes. So I signed up today for my first history class at NSCC! I will be taking History of World Civilizations 1. Classes start this Monday.
It feels great to be on my way to my goal....an MA in History.
It feels great to be on my way to my goal....an MA in History.
Friday, January 14, 2011
What is a cure?
I apparently opened a can of worms this morning on Twitter when I said a cure was a laughable matter. In my opinion I do not think a cure for anything, including CF, will ever be found. I have two reasons for thinking this. One being financial gain and the other being what a true "cure" really is.
****** Before I go on, please remember. THIS IS MY BLOG therefore MY OPINIONS. No one is right, no one is wrong. We all have different views on everything. Please respect this. Any negative name calling comments to me, or to anyone who responds will be deleted. If you want to be rude, at least show your face and don't post as anon, or if you do, leave your name. *******
Let's start with the latter - what a true "cure" really is. This will vary for everyone. Some people feel that just being able to treat the disease effectively with meds, and allowing the person to live to the normal lifespan is a cure. I don't see it that way. To ME a cure is eradicating the disease. Wiping it out so it no longer exists. This is not possible for many many diseases, maybe even all of them. CF for example can never be wiped out unless every single person who procreates is tested and allows their unborn fetus to be scientifically "created" so no CF genes are carried on. The money required for this is outstanding. Not every single CF carrier or CF patient can afford this. Once that person is born with CF, they are going to have CF in every single gene of their body until death. CF is genetic, it is written into our DNA. Unless we can totally change every single gene in the body and "fix" that one malfunction, we can't sure it. And even if that gene is fixed after the child is born, there is some damage done. That damage starts from the beginning...maybe that child would have been heavier at birth. Maybe that child had MI when it was born which lead to the diagnosis, and now the damage from that is there. Even if they were to be "cured" of the gene, the damage is done; yes insignificantly perhaps, but it is still done.
We can carry this through to other diseases. Let's use Cancer as our next example. In a way yes it is partially cured as is. We can remove the breasts of a woman with breast cancer and she is essentially cured as long as it hadn't spread to any other organs. We can remove the tumor filled colon and that person no longer has colon cancer. But they can still get cancer, in other organs. Cancer has not been cured, that person has just been ridden of the disease for now. It may come back and kill them, or something else might, no one knows. But as long as cancer exists, it is not cured.
My other line of reasoning for why disease will never be cured, is that there is too much money to be gained from the meds used to treat diseases. CF alone has a HUGE financial gain factor. A months supply of Cayston is $5000.00. Where that money goes I have no idea, but I highly doubt the owner of the drug company drives a used Saturn and lives in a two thousand square foot home. Why would he/she want to give up their lifestyle when a cure is found and those meds that support that lifestyle are no longer needed. Yes the medical field, research etc is supposed to be about helping others, but if you think that no one is in it for the money you are naive. This country was founded by the rich for the rich (whole other topic) and anyone who can take advantage of the opportunities that the country offers. Supplying medicines and technology for those who medically need it is just another business, like cars or clothing. Only thing different is lives are at stake.
I am well aware I may lose some friends for posting this. Some of my followers may decide I am a ruthless, cold hearted bitch. That's fine. Like I said in the beginning, this is my opinion. Maybe I would feel different if it was my child with CF and not me. I don't know. But this is how I feel as of right now, just me and my unscientific opinion. A cure may be found, and I hope I am proved wrong. Believe me, its not that I don't want them to find a cure, its just that I don't think they will.
****** Before I go on, please remember. THIS IS MY BLOG therefore MY OPINIONS. No one is right, no one is wrong. We all have different views on everything. Please respect this. Any negative name calling comments to me, or to anyone who responds will be deleted. If you want to be rude, at least show your face and don't post as anon, or if you do, leave your name. *******
Let's start with the latter - what a true "cure" really is. This will vary for everyone. Some people feel that just being able to treat the disease effectively with meds, and allowing the person to live to the normal lifespan is a cure. I don't see it that way. To ME a cure is eradicating the disease. Wiping it out so it no longer exists. This is not possible for many many diseases, maybe even all of them. CF for example can never be wiped out unless every single person who procreates is tested and allows their unborn fetus to be scientifically "created" so no CF genes are carried on. The money required for this is outstanding. Not every single CF carrier or CF patient can afford this. Once that person is born with CF, they are going to have CF in every single gene of their body until death. CF is genetic, it is written into our DNA. Unless we can totally change every single gene in the body and "fix" that one malfunction, we can't sure it. And even if that gene is fixed after the child is born, there is some damage done. That damage starts from the beginning...maybe that child would have been heavier at birth. Maybe that child had MI when it was born which lead to the diagnosis, and now the damage from that is there. Even if they were to be "cured" of the gene, the damage is done; yes insignificantly perhaps, but it is still done.
We can carry this through to other diseases. Let's use Cancer as our next example. In a way yes it is partially cured as is. We can remove the breasts of a woman with breast cancer and she is essentially cured as long as it hadn't spread to any other organs. We can remove the tumor filled colon and that person no longer has colon cancer. But they can still get cancer, in other organs. Cancer has not been cured, that person has just been ridden of the disease for now. It may come back and kill them, or something else might, no one knows. But as long as cancer exists, it is not cured.
My other line of reasoning for why disease will never be cured, is that there is too much money to be gained from the meds used to treat diseases. CF alone has a HUGE financial gain factor. A months supply of Cayston is $5000.00. Where that money goes I have no idea, but I highly doubt the owner of the drug company drives a used Saturn and lives in a two thousand square foot home. Why would he/she want to give up their lifestyle when a cure is found and those meds that support that lifestyle are no longer needed. Yes the medical field, research etc is supposed to be about helping others, but if you think that no one is in it for the money you are naive. This country was founded by the rich for the rich (whole other topic) and anyone who can take advantage of the opportunities that the country offers. Supplying medicines and technology for those who medically need it is just another business, like cars or clothing. Only thing different is lives are at stake.
I am well aware I may lose some friends for posting this. Some of my followers may decide I am a ruthless, cold hearted bitch. That's fine. Like I said in the beginning, this is my opinion. Maybe I would feel different if it was my child with CF and not me. I don't know. But this is how I feel as of right now, just me and my unscientific opinion. A cure may be found, and I hope I am proved wrong. Believe me, its not that I don't want them to find a cure, its just that I don't think they will.
Monday, January 3, 2011
Inhaled ABX and me do not mix!
Well it is official....I can not do any inhaled antibiotics anymore. My last shot was the Cayston and my body rejected that this round.
I am thankful I had the Colistin experience to draw from otherwise I might have let this get too far. And by this I mean the tight lungs and low O2 sats.
It all started when I received my Cayston on December 23rd. Already a few days late thanks to a glitch at the processing center in Lynn. I was supposed to have it by the 20th, but no big deal. I could still get my 28 days in by January 18th for day one of the study. I started the regimen that evening and felt normal. Same for Christmas Eve and then again on Christmas. Though I was feeling a bit tight by Christmas morning, we attributed it to running around like crazy all week. I woke up on Sunday feeling tight and it just got worse. Not horrible but worse; I even asked about tightness on CF2Chat to see if anyone else had tightness from Cayston (it's a very well tolerated medicine). No one had but there were some suggestions for me to try. Things I'd have to wait to ask my doctor for on Monday/Tuesday. Sunday into Monday we got a blizzard and pretty much everything was shut down, including my doctor's office. So I made sure I took my Zithro, Symbicort and Albuterol before the Cayston, even giving the Symbicort 15 minutes to get into my lungs. It didn't help. I made sure to do the Albuterol at dose #2, and that didn't help. By Monday night I was dreading packing the car for Em and I to leave on Tuesday for PA. At this point my O2 really wasn't much lower than normal though I wasn't checking it as often as I would when I am sick. I also ran a 101.1 fever on Sunday night which didn't go away until Monday morning when I finally took some Motrin.
Tuesday rolled around and I woke up with a fever again...99.6, which no is not bad but to start the day on that is no fun. I took more Motrin and started my regimen and prayed it wouldn't start to bother me till after the car was packed. I got lucky and while I was tight I was able to pack everything in. Even in the cold air. That didn't last long. We left for PA and things were good. Sitting in the car doesn't really expel must energy thankfully. However, when we stopped at a rest stop for lunch things just went blah. I could barely walk into the rest stop I was so SOB. Granted it was freezing outside but the walk was maybe 100 yards at most. Nothing bad, no hills etc. We ate and when we walked back to the car I was even worse so as I sat trying to catch my breath I checked my O2. 83% and 156 HR. No good! I knew then that the Cayston was not working out. I still finished the day out though and even one dose into Wednesday.
As Tuesday wore on, even just driving in the car, my SOB got worse. Talking became difficult; full sentences were hard to get out without stopping to gasp. Even Em noticed. My resting HR was now in the 140s even with my O2 running 90-93%. And silly me didn't bring my portable O2 because "I don't need it with rest" HA! Shame on me but really I had so much packed already that I couldn't even think of packing more. Not that it would have helped much since I slept poorly next to Em anyway.
Wednesday morning was my last dose of the Cayston....my idea, as I still hadn't contacted my doctor. By Wednesday night I was feeling slightly better. The tightness had let up some so that I didn't totally scare my dad at dinner. Thursday morning I wrote to the NP at Children's and explained everything, also asking for a prescription for Prednisone. It was the only thing that had helped with the Colistin troubles. They called me back and said to definitely stop the Cayston and up the albuterol to 3-4 times a day if I hadn't already. With that alone the tightness should wear off, but they were calling in the prednisone just to be safe. She said if my breathing did not improve and my O2 stayed low to go to Brigham's ER. Fortunately I didn't get to that point. By Thursday night, when Em and I got home I was feeling pretty good and when I started the prednisone on Friday night I felt even better.
As of now I feel normal and on the plus side....my fevers have gone! Totally gone. I am back to running around 96.5-97.1! So happy!!!
Disappointment is definitely called for as I now can only take oral Cipro, if we catch the infection in time, or IV meds. Though I might see about trying the Cayston again after the study, but starting Prednisone before I start the Cayston. It might work and help keep me off IVs. If not, a Cyster mentioned seeing if I can stay on a low maintenance dose of Prednisone since I respond so well to it. That is a thought too and both have gone into my list of things for my appointment.
When this happens I always catch a glimpse into my future. I am fairly healthy now, even with low lung functions and reactive airways. Which, ironically, don't seem to be bothered by some things that bother those without CF (some perfumes, cleaning products, candles). But struggling to breathe always sheds light on my situation. That really any day I can wake up with lungs that are far worse than when I went to bed. That one day Prednisone alone will not open my airways up. That one day I will need a highly invasion surgery to make me able to breathe better. The key in all of that is ONE DAY. For now, I thank God that the Prednisone and discontinuing the Cayston worked. That I am now running on a manic episode thanks to the Prednisone and getting tons of things accomplished. That I am now home and breathing with this less than perfect but still my own lungs.
I am thankful I had the Colistin experience to draw from otherwise I might have let this get too far. And by this I mean the tight lungs and low O2 sats.
It all started when I received my Cayston on December 23rd. Already a few days late thanks to a glitch at the processing center in Lynn. I was supposed to have it by the 20th, but no big deal. I could still get my 28 days in by January 18th for day one of the study. I started the regimen that evening and felt normal. Same for Christmas Eve and then again on Christmas. Though I was feeling a bit tight by Christmas morning, we attributed it to running around like crazy all week. I woke up on Sunday feeling tight and it just got worse. Not horrible but worse; I even asked about tightness on CF2Chat to see if anyone else had tightness from Cayston (it's a very well tolerated medicine). No one had but there were some suggestions for me to try. Things I'd have to wait to ask my doctor for on Monday/Tuesday. Sunday into Monday we got a blizzard and pretty much everything was shut down, including my doctor's office. So I made sure I took my Zithro, Symbicort and Albuterol before the Cayston, even giving the Symbicort 15 minutes to get into my lungs. It didn't help. I made sure to do the Albuterol at dose #2, and that didn't help. By Monday night I was dreading packing the car for Em and I to leave on Tuesday for PA. At this point my O2 really wasn't much lower than normal though I wasn't checking it as often as I would when I am sick. I also ran a 101.1 fever on Sunday night which didn't go away until Monday morning when I finally took some Motrin.
Tuesday rolled around and I woke up with a fever again...99.6, which no is not bad but to start the day on that is no fun. I took more Motrin and started my regimen and prayed it wouldn't start to bother me till after the car was packed. I got lucky and while I was tight I was able to pack everything in. Even in the cold air. That didn't last long. We left for PA and things were good. Sitting in the car doesn't really expel must energy thankfully. However, when we stopped at a rest stop for lunch things just went blah. I could barely walk into the rest stop I was so SOB. Granted it was freezing outside but the walk was maybe 100 yards at most. Nothing bad, no hills etc. We ate and when we walked back to the car I was even worse so as I sat trying to catch my breath I checked my O2. 83% and 156 HR. No good! I knew then that the Cayston was not working out. I still finished the day out though and even one dose into Wednesday.
As Tuesday wore on, even just driving in the car, my SOB got worse. Talking became difficult; full sentences were hard to get out without stopping to gasp. Even Em noticed. My resting HR was now in the 140s even with my O2 running 90-93%. And silly me didn't bring my portable O2 because "I don't need it with rest" HA! Shame on me but really I had so much packed already that I couldn't even think of packing more. Not that it would have helped much since I slept poorly next to Em anyway.
Wednesday morning was my last dose of the Cayston....my idea, as I still hadn't contacted my doctor. By Wednesday night I was feeling slightly better. The tightness had let up some so that I didn't totally scare my dad at dinner. Thursday morning I wrote to the NP at Children's and explained everything, also asking for a prescription for Prednisone. It was the only thing that had helped with the Colistin troubles. They called me back and said to definitely stop the Cayston and up the albuterol to 3-4 times a day if I hadn't already. With that alone the tightness should wear off, but they were calling in the prednisone just to be safe. She said if my breathing did not improve and my O2 stayed low to go to Brigham's ER. Fortunately I didn't get to that point. By Thursday night, when Em and I got home I was feeling pretty good and when I started the prednisone on Friday night I felt even better.
As of now I feel normal and on the plus side....my fevers have gone! Totally gone. I am back to running around 96.5-97.1! So happy!!!
Disappointment is definitely called for as I now can only take oral Cipro, if we catch the infection in time, or IV meds. Though I might see about trying the Cayston again after the study, but starting Prednisone before I start the Cayston. It might work and help keep me off IVs. If not, a Cyster mentioned seeing if I can stay on a low maintenance dose of Prednisone since I respond so well to it. That is a thought too and both have gone into my list of things for my appointment.
When this happens I always catch a glimpse into my future. I am fairly healthy now, even with low lung functions and reactive airways. Which, ironically, don't seem to be bothered by some things that bother those without CF (some perfumes, cleaning products, candles). But struggling to breathe always sheds light on my situation. That really any day I can wake up with lungs that are far worse than when I went to bed. That one day Prednisone alone will not open my airways up. That one day I will need a highly invasion surgery to make me able to breathe better. The key in all of that is ONE DAY. For now, I thank God that the Prednisone and discontinuing the Cayston worked. That I am now running on a manic episode thanks to the Prednisone and getting tons of things accomplished. That I am now home and breathing with this less than perfect but still my own lungs.
Subscribe to:
Posts (Atom)