Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right! I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health???
Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day.
8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I'd have a few more years before I really started running out of options for meds, but it is what it is.
Since this is the first time I have ever had Avycaz, I'm hopeful that it and the Symdeko (that I started on the 10th) will continue to both work hard to boost my numbers; I'm hoping to bump my health up enough that I can remain stable and avoid IV's for at least 9 months after this tune-up. The longer I go in between IVs and fewer times I use this antibiotics the better. Running out of options and becoming resistant to the meds makes life a lot tougher.
This is why I need to find the perfect balance of work, family, and CF. Which can be difficult. It means making time for working out, making sure meds and eating are a priority. I need to make sure I stick to my routine and don't overdo it. I'm thankful I can do a lot of my Real Estate work from home. Having enough time in the day for everything on a typical day is hard. But when you add Home IVs in... It can be nearly impossible. My schedule becomes a little more crazy. Administering IVs 4 x a day and adding two more rounds of nebulizers/ airway clearance. Plus, remembering to eat and take all my pills. Not to mention working, taking care of my kiddo, running the house and doing errands. BUT, thanks to my support system and my handy dandy phone calendar... I will survive.
But the good news is that we did check my current lung function and weight today. I was 39% lung function and 104 lbs on the 10th (when I was admitted). Today I weigh 106 and had 50% lung function ----> That's right!!! 50% FEV1. I haven't seen the 50s in a long time and I finally feel positive in that I can reach 60%. I'm unsure if this is thanks to the 7 days of Symdeko that I have taken, or if 5 days worth of Avycaz has really boosted me. Perhaps it is a mixture of both, but either way I can't wait to see what this combo can do for me over the next 1.5 weeks that I'm doing IVs at home! I am going to focus and work super hard to get the healthiest I can. I have been struggling in the 30s and 40s for a 1.5 years and I'm beyond happy to break through those numbers. I honestly, was starting to believe the low 40s was my new baseline. It feels unbelievable to gain back lung function, after it had starting feeling hopeless. It was the exact boost I needed to motivate me again! It feels great to know Orkambi didn't kill my numbers for good, I just have rough road ahead of hard work.
My IV's will end on the 27th and I hope all my work will show at my next clinic in May! I will let you all know how that appointment goes... and I will post some updates of "Life with Home IVs" on my FB page.
Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day.
8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I'd have a few more years before I really started running out of options for meds, but it is what it is.Since this is the first time I have ever had Avycaz, I'm hopeful that it and the Symdeko (that I started on the 10th) will continue to both work hard to boost my numbers; I'm hoping to bump my health up enough that I can remain stable and avoid IV's for at least 9 months after this tune-up. The longer I go in between IVs and fewer times I use this antibiotics the better. Running out of options and becoming resistant to the meds makes life a lot tougher.
This is why I need to find the perfect balance of work, family, and CF. Which can be difficult. It means making time for working out, making sure meds and eating are a priority. I need to make sure I stick to my routine and don't overdo it. I'm thankful I can do a lot of my Real Estate work from home. Having enough time in the day for everything on a typical day is hard. But when you add Home IVs in... It can be nearly impossible. My schedule becomes a little more crazy. Administering IVs 4 x a day and adding two more rounds of nebulizers/ airway clearance. Plus, remembering to eat and take all my pills. Not to mention working, taking care of my kiddo, running the house and doing errands. BUT, thanks to my support system and my handy dandy phone calendar... I will survive.
But the good news is that we did check my current lung function and weight today. I was 39% lung function and 104 lbs on the 10th (when I was admitted). Today I weigh 106 and had 50% lung function ----> That's right!!! 50% FEV1. I haven't seen the 50s in a long time and I finally feel positive in that I can reach 60%. I'm unsure if this is thanks to the 7 days of Symdeko that I have taken, or if 5 days worth of Avycaz has really boosted me. Perhaps it is a mixture of both, but either way I can't wait to see what this combo can do for me over the next 1.5 weeks that I'm doing IVs at home! I am going to focus and work super hard to get the healthiest I can. I have been struggling in the 30s and 40s for a 1.5 years and I'm beyond happy to break through those numbers. I honestly, was starting to believe the low 40s was my new baseline. It feels unbelievable to gain back lung function, after it had starting feeling hopeless. It was the exact boost I needed to motivate me again! It feels great to know Orkambi didn't kill my numbers for good, I just have rough road ahead of hard work.
My IV's will end on the 27th and I hope all my work will show at my next clinic in May! I will let you all know how that appointment goes... and I will post some updates of "Life with Home IVs" on my FB page.
Glad to hear you are out of hospital and that meds are working. Hope they continue to work well and there are no complications or anything. Praying that all goes well with court date. Remember to keep everything in perspective. And just take everything as it comes one day at a time
ReplyDeleteThank you Doug, I appreciate that and you are so right!
ReplyDelete