should I go home??

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Red9928

Guest
I was diagnosed with CF 4 years ago at age 40. I have been lucky to manage past exacerbations with oral antibiotics, but my PFTs dropped significantly this time and I earned my first trip to the hospital for IV antibiotics (vanco, ceftazadime and tobramycin). After a week inpatient I am feeling soooo... much better and considering discharge to home. Feeling confidant that I would be able to manage home IVs and continue to rest at home, but I do have 8 year old twin boys, and one seems to have developed sniffles and a dry cough. Now I'm questioning heading home (as is my treatment team). The boys will be in school (he's not so unwell to miss school thankfully, so far appears to be minor!) and he knows to keep his distance, and I could wear a mask; my husband will also be a big help! I am also feeling they are 8, there will always be a risk, I will obviously need to be vigilant. I know this needs to be my decision, but I'm just hoping for any input from others as this will also be my first time doing home ivs. Thank you!!!
 
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Printer

Active member
I have stayed at both MGH and The Brigham. Given that you are at MGH, stay as long as necessary. Say hello to Lenny and Ann for me.

Bill
 
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Red9928

Guest
I will tell them you said hello! I am not feeling pressured to leave, and my family is being very supportive and not pressuring me to come home which makes things much easier. So I will take it a day at a time. Thanks for your input.

Monica
 
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jaimers

Super Moderator
I go to MGH as well. the team there is awesome. I've found that sometimes home is better for me if the only thing i have to do it take care of myself. I don't love the hospital food and usually end up losing weight, then the dietician gets grumpy with me hahaha. I sleep better at home, eat better, just generally do most things better when i'm at home. The only downside is that you are in charge of doing all your meds, airway clearance, etc. When i have other things going on (don't have kids, but work, outside commitments, etc.) I tend to forget to add in all of the extra PT/Vest sessions, exercise, and most importantly get enough rest! If you've never done home IVs it's probably worth a shot to try them out.
 
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Emer76

New member
Having children myself and doing tons of home ivs I would suggest staying in since one of your children has the sniffles. You do not want to get sick and possibly have to be admitted again or have to stay on ivs longer. Antibiotics kill the bad and good bacteria so your immune system will be down. Hope this helps. Wish you well.
 
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MichaelL

New member
Personally, I always prefer home over the hospital. At home, I can rest better, I'm more comfortable and I eat better and more food. If you would still be on three drugs at home, that could be tricky to keep up with the schedule and could effect your ability to get a good night's sleep. I'm currently on two home IVs -- one runs every six hours by pump and the other one is run three times a week. I find that manageable at home.

In terms of your son who might be sick, I would just avoid contact with him until he's feeling better.
 
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Wldhrtd1

Guest
our youngest with cf, 17, goes to MGH also... maybe think of it as after you have a baby.... get the rest that you need at the hospital to feel you best then home to deal with life!! :)
 
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stephen

Guest
Red9928

Many times I've heard hospitals are one of the best places to pick up infections and to stay away if you possibly can!

My experiences with home IVs have always been very positive. You are fairly free to live your normal life, even driving while infusing. For me the most difficult thing was covering the PICC line while showering; so you can see that I did not find it a big deal.

Good luck on whatever you do, now and in the future.
 
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Red9928

Guest
Thank you all for your input! I headed home on Friday to finish ivs. So far so good. Although I had a very good experience in the hospital (yes, Bill, I was a frequent Eat Street visitor!) I'm finding myself more relaxed at home and am getting a lot more sleep. I am very lucky to have a lot of support, the husband is not letting me do much! I am on three meds at home, 6 infusions a day (phew!), but it's proving manageable and I'll be finished on Wednesday... Most importantly, I'm continuing to feel better!!
 
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