Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn.
As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations). After going on Orkambi I dropped from 58% to my lowest 30% in a matter of months... BAM 30%. Scary.. And once I discontinued Orkambi in October of 2017 I did see it go from the 30s up to 40s over the next 4-5 months. But it was slowly climbing and even reached 48% in Feb of this year. I was so excited. I felt pretty decent too. However, the virus in March set me back and my lung function dropped back down to 41%.
Since the virus I just haven't had my normal energy, breathing ability, or even appetite. It has been a struggle this last month. I called and went into the Doc's on Tuesday. Found out my lung function was sitting round 39%. Neither of us felt okay about this and decided it was time to do a full tune-up.
My last full tune- up (2-3 full weeks of IV meds) was in October of last year. And sadly, my last two hospital stays and tune-ups have done little to nothing to boost my numbers. I'm running out of options with the regular med options. Tobra, Colliston, Meropenum IVs just aren't cutting it anymore, I'm becoming resistant and seeing less impact each stay. That's beyond frustrating. It's scary to start running out of options, this is why I need to stay the healthiest I can.
The Doctors felt it was time to pull out a big gun, a new antibiotic (with a booster) that came to market in the last three years. It is distantly related to another antibiotic I'm allergic to, but we are giving it a shot. I have had one dose and so far so good. I'm hopeful that being on this new (to market and my system) and powerful drug will help boost me back to my old "good" numbers. Here's hoping I hit the high 50s! But, it's also nerve racking. If this med doesn't work well, I feel like I'm running out of options. But, also as I use this new drug over and over for hospital stays in the future, who knows how many years it will take to be resistant to it. Doc said there is one other option I have too, but 2... 2 meds (pretty much) that's it. So yes, we need research! Research for gene-targeting drugs to keep us stable, research for antibiotics, and so much more!
I don't mean to scare anyone, but want to show realistic side of CF. Speaking of research and new gene-targeting drugs.... Did you know the 3rd gene-modifying drug came to market this year! It's called Symdeko. It's similar to Orkambi in the way it works, but is more effective and has less side effects. I received it in the mail last week and my CF center said to start while in the hospital (to be safe). So I took my first dose yesterday...Hopefully I respond well to it. I haven't heard of many responding negatively yet. I have heard some people don't feel any different or see any change, but fingers crossed. I need this to help my numbers.
Kayldeco, Orkambi, Symdeko are only the beginning, let's keep seeing those new advances come to market!
So here I am...Day 3 of my 2nd hospital stay of the year....waiting and hoping (and sleeping)....
As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations). After going on Orkambi I dropped from 58% to my lowest 30% in a matter of months... BAM 30%. Scary.. And once I discontinued Orkambi in October of 2017 I did see it go from the 30s up to 40s over the next 4-5 months. But it was slowly climbing and even reached 48% in Feb of this year. I was so excited. I felt pretty decent too. However, the virus in March set me back and my lung function dropped back down to 41%.
Since the virus I just haven't had my normal energy, breathing ability, or even appetite. It has been a struggle this last month. I called and went into the Doc's on Tuesday. Found out my lung function was sitting round 39%. Neither of us felt okay about this and decided it was time to do a full tune-up.
My last full tune- up (2-3 full weeks of IV meds) was in October of last year. And sadly, my last two hospital stays and tune-ups have done little to nothing to boost my numbers. I'm running out of options with the regular med options. Tobra, Colliston, Meropenum IVs just aren't cutting it anymore, I'm becoming resistant and seeing less impact each stay. That's beyond frustrating. It's scary to start running out of options, this is why I need to stay the healthiest I can.
The Doctors felt it was time to pull out a big gun, a new antibiotic (with a booster) that came to market in the last three years. It is distantly related to another antibiotic I'm allergic to, but we are giving it a shot. I have had one dose and so far so good. I'm hopeful that being on this new (to market and my system) and powerful drug will help boost me back to my old "good" numbers. Here's hoping I hit the high 50s! But, it's also nerve racking. If this med doesn't work well, I feel like I'm running out of options. But, also as I use this new drug over and over for hospital stays in the future, who knows how many years it will take to be resistant to it. Doc said there is one other option I have too, but 2... 2 meds (pretty much) that's it. So yes, we need research! Research for gene-targeting drugs to keep us stable, research for antibiotics, and so much more!
I don't mean to scare anyone, but want to show realistic side of CF. Speaking of research and new gene-targeting drugs.... Did you know the 3rd gene-modifying drug came to market this year! It's called Symdeko. It's similar to Orkambi in the way it works, but is more effective and has less side effects. I received it in the mail last week and my CF center said to start while in the hospital (to be safe). So I took my first dose yesterday...Hopefully I respond well to it. I haven't heard of many responding negatively yet. I have heard some people don't feel any different or see any change, but fingers crossed. I need this to help my numbers.Kayldeco, Orkambi, Symdeko are only the beginning, let's keep seeing those new advances come to market!
So here I am...Day 3 of my 2nd hospital stay of the year....waiting and hoping (and sleeping)....
Will be praying that these medications work out. And things will get back to normal. At least what passes for normal. Even if you don't feel like eating always try to eat something to keep your energy and strength up. Do you know how long you will be in hospital. Or how soon they will be able to tell how new meds are doing. How is Shoes doing. Hope everyone else is doing okay. And remember to wait awhile after you get out of hospital before doing any cartwheels. Don't want you overdoing things right away and wind up back in hospital. Well hope everything works out and you will be back to your usual routine. Do your best to keep your spirits up and to have a positive outlook on things because attitude is very important in getting better. I will be praying for you
ReplyDeleteThank you Doug! Shoes is going great, everyone really is. We should know if the IVs are working by early next week. Symdeko will take a month or two to really see a difference. I will keep everyone updated! Thank you!!! Hope you are well. :-) Take Care!
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