Any Ideas?

ryry11

New member
So, here's the story. I was hospitalized for the first time in October, in my first quarter at college, for two weeks. I was the healthiest I've ever been after I finished the two weeks in, and didn't miss a single day winter quarter for sickness. Then, spring quarter came, and I caught something. I started my month of TOBI on 3/26; I went to the clinic because I was a bit sick on 4/6. My doc and I decided to wait and see how I was doing, and to call if I wasn't feeling better. I started Bactrim on 4/14, and doxycycline on 4/16. I was feeling awful by the 20th, and went back in. They put me on 2 more weeks of TOBI after I finished the 28 days, Albuterol nebs twice a day (I usually do an inhaler twice a day) and increased CPT to half an hour of vest twice a day (I usually do the acapella 3 times a day), as well as a 7-day Prednisone burst. I can't take Cipro because of joint side effects (they're afraid my Achille's tendon will break). I finished Prednisone this past Friday, Septra on Saturday and will finish doxy tomorrow. I'm still doing albuterol twice a day and so much vest, but that's to stay feeling okay enough to function. If I don't do it, I feel like I'm suffocating of stuff in my chest. I'm still feeling sick. I'm coughing a lot of stuff up (which is not my baseline!), I'm just not feeling good, and I'm progressively achier over the past few days (which is a solid indicator that I'm sick.) I don't know what I can do. I really don't want to get admitted right now, it's towards the end of spring quarter and I <strong>cannot</strong>miss a week or two of school! I know, health comes first, but I don't feel sick enough to be admitted, I'm just not getting better. I don't think they'd put a PICC in and send me home; I got a blood clot last time they put one in within 48 hours of it going in, and had to use peripherals for the next 10 days in the hospital. :/Does anyone have any ideas I could suggest? Cayston is backordered, and I haven't been on it in the past few months, so I can't get it without a special order and whatnot.
 

ryry11

New member
So, here's the story. I was hospitalized for the first time in October, in my first quarter at college, for two weeks. I was the healthiest I've ever been after I finished the two weeks in, and didn't miss a single day winter quarter for sickness. Then, spring quarter came, and I caught something. I started my month of TOBI on 3/26; I went to the clinic because I was a bit sick on 4/6. My doc and I decided to wait and see how I was doing, and to call if I wasn't feeling better. I started Bactrim on 4/14, and doxycycline on 4/16. I was feeling awful by the 20th, and went back in. They put me on 2 more weeks of TOBI after I finished the 28 days, Albuterol nebs twice a day (I usually do an inhaler twice a day) and increased CPT to half an hour of vest twice a day (I usually do the acapella 3 times a day), as well as a 7-day Prednisone burst. I can't take Cipro because of joint side effects (they're afraid my Achille's tendon will break). I finished Prednisone this past Friday, Septra on Saturday and will finish doxy tomorrow. I'm still doing albuterol twice a day and so much vest, but that's to stay feeling okay enough to function. If I don't do it, I feel like I'm suffocating of stuff in my chest. I'm still feeling sick. I'm coughing a lot of stuff up (which is not my baseline!), I'm just not feeling good, and I'm progressively achier over the past few days (which is a solid indicator that I'm sick.) I don't know what I can do. I really don't want to get admitted right now, it's towards the end of spring quarter and I <strong>cannot</strong>miss a week or two of school! I know, health comes first, but I don't feel sick enough to be admitted, I'm just not getting better. I don't think they'd put a PICC in and send me home; I got a blood clot last time they put one in within 48 hours of it going in, and had to use peripherals for the next 10 days in the hospital. :/Does anyone have any ideas I could suggest? Cayston is backordered, and I haven't been on it in the past few months, so I can't get it without a special order and whatnot.
 

Aboveallislove

Super Moderator
I am so sorry for what you are facing now. I don't have any suggestions on the health issues but wanted to let you know that I taught undergrads for over 10 years at a university (in the U.S.) and there is absolutely NO ISSUE with working with faculty to finish off the semester in unique ways. The easiest thing at most colleges is getting an "X" grade and then finishing up the coursework later. This might work well given that you are heading into the summer. You likely could do some of the work while in the hospital but then do make-ups spread out over the summer. PM me if you think this might be a good approach and I can help you lay out a step-by-step approach for making this work. I really think you need to get in b/f something irreverisible happens and at the same time know you don't want to get further behind, get lower grades, throw the semester away, etc. etc. Hugs
 

Aboveallislove

Super Moderator
I am so sorry for what you are facing now. I don't have any suggestions on the health issues but wanted to let you know that I taught undergrads for over 10 years at a university (in the U.S.) and there is absolutely NO ISSUE with working with faculty to finish off the semester in unique ways. The easiest thing at most colleges is getting an "X" grade and then finishing up the coursework later. This might work well given that you are heading into the summer. You likely could do some of the work while in the hospital but then do make-ups spread out over the summer. PM me if you think this might be a good approach and I can help you lay out a step-by-step approach for making this work. I really think you need to get in b/f something irreverisible happens and at the same time know you don't want to get further behind, get lower grades, throw the semester away, etc. etc. Hugs
 

bigstar

New member
I would talk to my doctor and explain the situation. I would discuss again the possibility of taking Cipro, by taking advice from an orthopedic maybe.... I would also discuss the possibility of home IVs i do it every time. Two days in the hospital and then I go home. I dont have a port or a Picc i use a peripheral. It is small and its not even visible if you wear long sleeves. It is not dangerous. It cloggs sometimes but any nurse can put a new one easily. Tell your doctor that someone will help you with all the process and the mixing (mom,dad, bf,nurse) It is not a big deal really. Not worthy of risking your health. I hope you feel better soon and you wont need it!
 

bigstar

New member
I would talk to my doctor and explain the situation. I would discuss again the possibility of taking Cipro, by taking advice from an orthopedic maybe.... I would also discuss the possibility of home IVs i do it every time. Two days in the hospital and then I go home. I dont have a port or a Picc i use a peripheral. It is small and its not even visible if you wear long sleeves. It is not dangerous. It cloggs sometimes but any nurse can put a new one easily. Tell your doctor that someone will help you with all the process and the mixing (mom,dad, bf,nurse) It is not a big deal really. Not worthy of risking your health. I hope you feel better soon and you wont need it!
 

ryry11

New member
Aboveallislove: If clinic goes badly on Friday, I'll ask to stay out until Monday evening and use Monday to go talk to my professors and the Disability Services office. I have a pretty good relationship with the disability coordinator, he was pretty helpful last time I was in in October. I think my profs would be accommodating, I just hate having that have to be the case. I'm usually one who just figs through and goes to class unless I physically cannot do so, so hospitalizations throw a wrench in my whole MO. Thank you, if it comes to going in, I will PM you.
Bigstar: I might talk to him about Cipro, I'm so hesitant about it, because it does just kill my joints for months afterwards. I'm not sure the hospital or my insurance allows you to go home with peripherals, but I'll ask. I clotted a line every 12-36 hours last time, and I live by myself. I'll talk to my docs about it. Thanks!
 

ryry11

New member
Aboveallislove: If clinic goes badly on Friday, I'll ask to stay out until Monday evening and use Monday to go talk to my professors and the Disability Services office. I have a pretty good relationship with the disability coordinator, he was pretty helpful last time I was in in October. I think my profs would be accommodating, I just hate having that have to be the case. I'm usually one who just figs through and goes to class unless I physically cannot do so, so hospitalizations throw a wrench in my whole MO. Thank you, if it comes to going in, I will PM you.
Bigstar: I might talk to him about Cipro, I'm so hesitant about it, because it does just kill my joints for months afterwards. I'm not sure the hospital or my insurance allows you to go home with peripherals, but I'll ask. I clotted a line every 12-36 hours last time, and I live by myself. I'll talk to my docs about it. Thanks!
 

bigstar

New member
I think you should consider home Ivs not just for now but in general! It is very comfortable being at your own house. Its a bless! Best of luck sweetie!
 

bigstar

New member
I think you should consider home Ivs not just for now but in general! It is very comfortable being at your own house. Its a bless! Best of luck sweetie!
 

Printer

Active member
You can get Cayston if your Doctor will request it on an emergency basis. Have him call the CF Pharmacy.

Bill
 

Printer

Active member
You can get Cayston if your Doctor will request it on an emergency basis. Have him call the CF Pharmacy.

Bill
 

Aboveallislove

Super Moderator
Do let me know and that's great you already have that relationship set up. And I can tell you that you are very typical of my former students--they hate to ask for anything, even when they needed it! But I also know that most professors will do anything to make it work/accomodate you. And there are a ton of creative options/approaches so just let me know. And I hope your appointment goes well.
 

Aboveallislove

Super Moderator
Do let me know and that's great you already have that relationship set up. And I can tell you that you are very typical of my former students--they hate to ask for anything, even when they needed it! But I also know that most professors will do anything to make it work/accomodate you. And there are a ton of creative options/approaches so just let me know. And I hope your appointment goes well.
 

ryry11

New member
Havoc: Me too. Especially since I clotted, infiltrated and crimped lines pretty much constantly last time, and live by myself. I'd be sort of worried about it, too.
Bill: I'll ask about that on Friday, that would be awesome.
Aboveall: I have two professors that I've had before; one had me fall quarter, and one is amazing and I know would do anything to help. The third is going to be a nightmare, but luckily I have the law on my side in that case. I'm hoping the clinic calls me this afternoon and we can talk about if they think it's a possibility. I'll start warning my profs if they think it is. Thanks!
 

ryry11

New member
Havoc: Me too. Especially since I clotted, infiltrated and crimped lines pretty much constantly last time, and live by myself. I'd be sort of worried about it, too.
Bill: I'll ask about that on Friday, that would be awesome.
Aboveall: I have two professors that I've had before; one had me fall quarter, and one is amazing and I know would do anything to help. The third is going to be a nightmare, but luckily I have the law on my side in that case. I'm hoping the clinic calls me this afternoon and we can talk about if they think it's a possibility. I'll start warning my profs if they think it is. Thanks!
 
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