Treatment Routine Problems - Finding Time!

[Liza]

Holly Cathryn, You are amazing. You really sound like you have it all down. I really don't have many suggestions on how to work in that mid-day treatment except like someone else mentioned, right after putting your daughter down for her nap. Here's a suggestion for your night time routine though. I know you do the vest and for most people (I think) the vest is a move up from using a percussor. But here's a thought, why not involve your husband in your treatment and have him do percussion? It's not loud and you can still talk or watch TV. Someone else mentioned the Flutter but there's also the thought of using a PEP, there are those that can be used with a Pari Neb as well.

On another note, you mentioned starting Muconex. Did your docs prescribe that? Was there a reason or something new to try? I am just wondering because we have recently heard of it ourselves. My husband is an ENT PA and at the annual conference in Sept. he was given some samples that we still have sitting on our dresser. He's been meaning to talk to our girls' doctor about it but they haven't had an appt. since the conference. I'm anxious to tell him about you being on it an what you had to say. He's out of town right now so I hope I dont' forget to tell him tomorrow.

Correct me if I"m wrong, you recently moved to Dallas children's for appts. is that right? Any particular reason other than maybe proximity that you chose Dallas over Cooks in Ft.Worth? We are looking at moving back to the DFW area next year. In fact that's where my husband is right now. We're looking at Austin and San Antonio too. My girls went to one appt. at Dallas C.H. back in 1990 (long story) but then in 91-92 went to Cooks instead (it was closer). Just curious.

Liza
(mom of 2 teen girls w/CF)

 

[Liza]

Holly Cathryn, You are amazing. You really sound like you have it all down. I really don't have many suggestions on how to work in that mid-day treatment except like someone else mentioned, right after putting your daughter down for her nap. Here's a suggestion for your night time routine though. I know you do the vest and for most people (I think) the vest is a move up from using a percussor. But here's a thought, why not involve your husband in your treatment and have him do percussion? It's not loud and you can still talk or watch TV. Someone else mentioned the Flutter but there's also the thought of using a PEP, there are those that can be used with a Pari Neb as well.

On another note, you mentioned starting Muconex. Did your docs prescribe that? Was there a reason or something new to try? I am just wondering because we have recently heard of it ourselves. My husband is an ENT PA and at the annual conference in Sept. he was given some samples that we still have sitting on our dresser. He's been meaning to talk to our girls' doctor about it but they haven't had an appt. since the conference. I'm anxious to tell him about you being on it an what you had to say. He's out of town right now so I hope I dont' forget to tell him tomorrow.

Correct me if I"m wrong, you recently moved to Dallas children's for appts. is that right? Any particular reason other than maybe proximity that you chose Dallas over Cooks in Ft.Worth? We are looking at moving back to the DFW area next year. In fact that's where my husband is right now. We're looking at Austin and San Antonio too. My girls went to one appt. at Dallas C.H. back in 1990 (long story) but then in 91-92 went to Cooks instead (it was closer). Just curious.

Liza
(mom of 2 teen girls w/CF)

 

[LittleLuckyDuck]

Hello! I've been doing 3 treatments a day for my whole life (well, since I was 3 wks old that is<img src="i/expressions/face-icon-small-tongue.gif" border="0">) and now I am just used to it. I can't imagine what I would do if suddenly my doctor told me only to do one a day. I guess what I'm saying is that my advice would be to try and get into a routine, and I completely understand how hard that will be with your family and all that you have to do, but hopefully once you get into a routine it will seem normal and much easier to deal with and fit in. People always ask me how I find the time, and I guess it has just become such a habit, that I don't think of it as having to find the time anymore. It is just what I do! I hope that eventually I will become the same for you! Good luck!!

Becky
19 w/cf

 

[LittleLuckyDuck]

Hello! I've been doing 3 treatments a day for my whole life (well, since I was 3 wks old that is<img src="i/expressions/face-icon-small-tongue.gif" border="0">) and now I am just used to it. I can't imagine what I would do if suddenly my doctor told me only to do one a day. I guess what I'm saying is that my advice would be to try and get into a routine, and I completely understand how hard that will be with your family and all that you have to do, but hopefully once you get into a routine it will seem normal and much easier to deal with and fit in. People always ask me how I find the time, and I guess it has just become such a habit, that I don't think of it as having to find the time anymore. It is just what I do! I hope that eventually I will become the same for you! Good luck!!

Becky
19 w/cf

 

[HollyCatheryn]

Thanks everyone for your support and encouragement. I think it is always hard to have your life changed in any significant way, especially when you are a care-taker of others and your routine affects their routine. You have all had great ideas and I'm not done experimenting. I think that doing the midday tx will work out best if I do as several of you suggested and do it as soon as Murren lays down. I may actually start by doing a short one and then work up to the full length. As to Liza...you my good lady are amazing. You must have invested and given of yourself so much (as any mother does, but especially...) to love and care for two teens with CF. I know what a mess I was as a teen only some of it partaining to CF, but it sure can throw gas on the fire at times. Hang in there. The Mucinex I decided to try for two reasons. I've been dealing with more congestion in the last year or so, but not being able to move it to clear it. I've lost my voice a dozen times in the last year from episodes of coughing trying to clear what I feel rattling, but without success. So I just dry cough and go hoarse. My husband and I are also trying to get pregnant again. We've been trying just the usual way for a year and a half uneventfully. I figured, if I can cough up what junk I have a little easier and as a desirable side-effect I become fertile, well GREAT!I had heard of guafeneisin (pardon the spelling) from a friend actually. My docs and CF team had never mentioned it. She told me to go to the pharmacy and ask for it. You can take up to 2 pills every 12 hours. I decided to start at that highest dose as a jump start. But, if you didn't feel you needed much you could start with as little as 1 pill every 24. I believe that each pill is 600mg and in the Mucinex formulation, you aren't getting the extras like you get in a cough suppressant or expectorant. I liked that. Liza, keep my information and let me know when your daughters are married and ready to start their families. By then, I will be a certified midwife and La Leche League leader and would love to help them have healthy pregnancies and deliveries and be able to nurse their babies through education and understanding the challenges that face women with CF as mothers.

 

[HollyCatheryn]

Thanks everyone for your support and encouragement. I think it is always hard to have your life changed in any significant way, especially when you are a care-taker of others and your routine affects their routine. You have all had great ideas and I'm not done experimenting. I think that doing the midday tx will work out best if I do as several of you suggested and do it as soon as Murren lays down. I may actually start by doing a short one and then work up to the full length. As to Liza...you my good lady are amazing. You must have invested and given of yourself so much (as any mother does, but especially...) to love and care for two teens with CF. I know what a mess I was as a teen only some of it partaining to CF, but it sure can throw gas on the fire at times. Hang in there. The Mucinex I decided to try for two reasons. I've been dealing with more congestion in the last year or so, but not being able to move it to clear it. I've lost my voice a dozen times in the last year from episodes of coughing trying to clear what I feel rattling, but without success. So I just dry cough and go hoarse. My husband and I are also trying to get pregnant again. We've been trying just the usual way for a year and a half uneventfully. I figured, if I can cough up what junk I have a little easier and as a desirable side-effect I become fertile, well GREAT!I had heard of guafeneisin (pardon the spelling) from a friend actually. My docs and CF team had never mentioned it. She told me to go to the pharmacy and ask for it. You can take up to 2 pills every 12 hours. I decided to start at that highest dose as a jump start. But, if you didn't feel you needed much you could start with as little as 1 pill every 24. I believe that each pill is 600mg and in the Mucinex formulation, you aren't getting the extras like you get in a cough suppressant or expectorant. I liked that. Liza, keep my information and let me know when your daughters are married and ready to start their families. By then, I will be a certified midwife and La Leche League leader and would love to help them have healthy pregnancies and deliveries and be able to nurse their babies through education and understanding the challenges that face women with CF as mothers.