Does this happen to anyone else?

[Rebjane]

You are not alone. I used to be wiped out after clinic day, totally. Hard to explain, just brought up alot of feelings. Maggie had been doing so well, these feeling had diminished and CF clinic day turned into a special mom and daughter day(weird I know)...
<br />
<br />Now, she's had a few set backs and we are going to clinic again in a few days after just having been there 2 weeks ago...I am anxious already, worried about PFT's, what her culture will show, etc. Lots of questions...Still hoping to make it to Target after though......

 

[brewz2]

You're definitely not alone...I'm beginning to dread each appointment. I feel like I'm on trial sometimes. My 9 year old was just dx'd with type 1 diabetes on top of everything and it's so much to keep on top of. Just when you think everythings under control, something else comes at you. I've come to the realization that my kids are young, the world doesn't come to an end if they forget to take their enzymes, skip doing their therapy every now and then - it just becomes so overwhelming. I really think my 9 year old has turned into a hypochondriac b/c of it. Everybody tells me I'm doing such a good job, but sometimes I feel so scatterbrained and unorganized :/
Tracey, mom to Sydney 9 w/cf & type 1 diabetes; and Seth 5, w/cf - both ddf508

 

[brewz2]

You're definitely not alone...I'm beginning to dread each appointment. I feel like I'm on trial sometimes. My 9 year old was just dx'd with type 1 diabetes on top of everything and it's so much to keep on top of. Just when you think everythings under control, something else comes at you. I've come to the realization that my kids are young, the world doesn't come to an end if they forget to take their enzymes, skip doing their therapy every now and then - it just becomes so overwhelming. I really think my 9 year old has turned into a hypochondriac b/c of it. Everybody tells me I'm doing such a good job, but sometimes I feel so scatterbrained and unorganized :/
Tracey, mom to Sydney 9 w/cf & type 1 diabetes; and Seth 5, w/cf - both ddf508

 

[brewz2]

You're definitely not alone...I'm beginning to dread each appointment. I feel like I'm on trial sometimes. My 9 year old was just dx'd with type 1 diabetes on top of everything and it's so much to keep on top of. Just when you think everythings under control, something else comes at you. I've come to the realization that my kids are young, the world doesn't come to an end if they forget to take their enzymes, skip doing their therapy every now and then - it just becomes so overwhelming. I really think my 9 year old has turned into a hypochondriac b/c of it. Everybody tells me I'm doing such a good job, but sometimes I feel so scatterbrained and unorganized :/
<br />Tracey, mom to Sydney 9 w/cf & type 1 diabetes; and Seth 5, w/cf - both ddf508

 

[ymikhale]

I actually dread the part after the appointment. Waiting for culture results, is it going to be just staph, any bad surprises, it is horrible, when i seel the hospital number ringing, i totally fall apart.

 

[ymikhale]

I actually dread the part after the appointment. Waiting for culture results, is it going to be just staph, any bad surprises, it is horrible, when i seel the hospital number ringing, i totally fall apart.

 

[ymikhale]

I actually dread the part after the appointment. Waiting for culture results, is it going to be just staph, any bad surprises, it is horrible, when i seel the hospital number ringing, i totally fall apart.

 

[CFmami]

I used to feel very anxious days before the appoinment. When staff members would come to the room and touch DD without washing their hands would make me feel very upset. I still take my own wipes to clean the room. I still asked them to wash their hands. Trying to keep my child from touching everything in the room. Waiting for the results, doctors not on the same page. So many things we have to deal with. Most friends don't understand what we go through. My own family don't understand what we have to deal with. They don't even want to learn more about CF. I don't want ppl to feel sorry for me or my child but it would be nice if they understand and are compasionate about it. I was going nuts. I started praying more and accepting God's will for me. Lately, I'm a little more relaxed.

 

[CFmami]

I used to feel very anxious days before the appoinment. When staff members would come to the room and touch DD without washing their hands would make me feel very upset. I still take my own wipes to clean the room. I still asked them to wash their hands. Trying to keep my child from touching everything in the room. Waiting for the results, doctors not on the same page. So many things we have to deal with. Most friends don't understand what we go through. My own family don't understand what we have to deal with. They don't even want to learn more about CF. I don't want ppl to feel sorry for me or my child but it would be nice if they understand and are compasionate about it. I was going nuts. I started praying more and accepting God's will for me. Lately, I'm a little more relaxed.

 

[CFmami]

I used to feel very anxious days before the appoinment. When staff members would come to the room and touch DD without washing their hands would make me feel very upset. I still take my own wipes to clean the room. I still asked them to wash their hands. Trying to keep my child from touching everything in the room. Waiting for the results, doctors not on the same page. So many things we have to deal with. Most friends don't understand what we go through. My own family don't understand what we have to deal with. They don't even want to learn more about CF. I don't want ppl to feel sorry for me or my child but it would be nice if they understand and are compasionate about it. I was going nuts. I started praying more and accepting God's will for me. Lately, I'm a little more relaxed.

 

[Treewife]

YES - yes - YES. Get nervous and scared pretty much every time - I know most of my fears stem from when I had to tell my daughter's CF team I was pregnant and they responded "are you sure you should have another child. We don't want Ashley to be neglected." They meant well but I have always been nervous that it isn't ENOUGH to do what wer are doing. It also doesn't help that every other appointment there is something that isn't good.

Doctor: PFTs are up but her weight is down - she needs to eat more. PFTs and weight are good but what about her social life? Does she have friends and get to do sleepovers? Oh she missed a treatment last week on tuesday because she was at a friends? Do you think you could get her compliancy up to where she doesn't miss, ya know at all? Maybe we need to think about the tube to get her weight up - oh she now has the tube but we are now concerned about her activity level. How about those sleepovers? Does she do her nightly feeds - oh she wants to miss so she can sleep over? Well her weight is really important for the PFTs and overall QOL. What about exercise? ... on and freaking on.

I know it's their job. I GET that. But holy cow it gets soooo frustrating.

 

[Treewife]

YES - yes - YES. Get nervous and scared pretty much every time - I know most of my fears stem from when I had to tell my daughter's CF team I was pregnant and they responded "are you sure you should have another child. We don't want Ashley to be neglected." They meant well but I have always been nervous that it isn't ENOUGH to do what wer are doing. It also doesn't help that every other appointment there is something that isn't good.

Doctor: PFTs are up but her weight is down - she needs to eat more. PFTs and weight are good but what about her social life? Does she have friends and get to do sleepovers? Oh she missed a treatment last week on tuesday because she was at a friends? Do you think you could get her compliancy up to where she doesn't miss, ya know at all? Maybe we need to think about the tube to get her weight up - oh she now has the tube but we are now concerned about her activity level. How about those sleepovers? Does she do her nightly feeds - oh she wants to miss so she can sleep over? Well her weight is really important for the PFTs and overall QOL. What about exercise? ... on and freaking on.

I know it's their job. I GET that. But holy cow it gets soooo frustrating.

 

[Treewife]

YES - yes - YES. Get nervous and scared pretty much every time - I know most of my fears stem from when I had to tell my daughter's CF team I was pregnant and they responded "are you sure you should have another child. We don't want Ashley to be neglected." They meant well but I have always been nervous that it isn't ENOUGH to do what wer are doing. It also doesn't help that every other appointment there is something that isn't good.
<br />
<br />Doctor: PFTs are up but her weight is down - she needs to eat more. PFTs and weight are good but what about her social life? Does she have friends and get to do sleepovers? Oh she missed a treatment last week on tuesday because she was at a friends? Do you think you could get her compliancy up to where she doesn't miss, ya know at all? Maybe we need to think about the tube to get her weight up - oh she now has the tube but we are now concerned about her activity level. How about those sleepovers? Does she do her nightly feeds - oh she wants to miss so she can sleep over? Well her weight is really important for the PFTs and overall QOL. What about exercise? ... on and freaking on.
<br />
<br />I know it's their job. I GET that. But holy cow it gets soooo frustrating.

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFmami</b></i>

I used to feel very anxious days before the appoinment. When staff members would come to the room and touch DD without washing their hands would make me feel very upset. I still take my own wipes to clean the room. I still asked them to wash their hands. Trying to keep my child from touching everything in the room. ....</end quote></div>

Ugh, I forgot about handwashing. The pulmonologist and nurses would never ever wash their hands and I'd have to remind them. Finally put a button on DS that said "Have you washed your hands and stethoscope today?" At least the hospital we go to requires handwashing and has signs up all over to NOT feel bed about reminding individuals to do so.

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFmami</b></i>

I used to feel very anxious days before the appoinment. When staff members would come to the room and touch DD without washing their hands would make me feel very upset. I still take my own wipes to clean the room. I still asked them to wash their hands. Trying to keep my child from touching everything in the room. ....</end quote>

Ugh, I forgot about handwashing. The pulmonologist and nurses would never ever wash their hands and I'd have to remind them. Finally put a button on DS that said "Have you washed your hands and stethoscope today?" At least the hospital we go to requires handwashing and has signs up all over to NOT feel bed about reminding individuals to do so.

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CFmami</b></i>
<br />
<br />I used to feel very anxious days before the appoinment. When staff members would come to the room and touch DD without washing their hands would make me feel very upset. I still take my own wipes to clean the room. I still asked them to wash their hands. Trying to keep my child from touching everything in the room. ....</end quote>
<br />
<br />Ugh, I forgot about handwashing. The pulmonologist and nurses would never ever wash their hands and I'd have to remind them. Finally put a button on DS that said "Have you washed your hands and stethoscope today?" At least the hospital we go to requires handwashing and has signs up all over to NOT feel bed about reminding individuals to do so.

 

[CJPsMom]

Yikes about the not washing at the clinic! I worry about it at our pediatrician's office - they seem a little too relaxed (like putting us in a room that hadn't been cleaned last visit), but our CF clinic is completely on top of that. We have signs for which rooms are for us, infants are only one afternoon a week and so on.

I would be VERY concerned about the clinic if I had to tell them to wash.

I will also say it's comforting to hear everyone say how stressful the clinic visit is. We're new to this and yesterday we had both the regular pediatrician visit for regular vaccines, then the clinic & PT. I cried myself to sleep twice last night and cried all the way to work today. It's good to know that my reaction isn't all that out of the ordinary.

It's comforting, but I wish none of us were going through this.

 

[CJPsMom]

Yikes about the not washing at the clinic! I worry about it at our pediatrician's office - they seem a little too relaxed (like putting us in a room that hadn't been cleaned last visit), but our CF clinic is completely on top of that. We have signs for which rooms are for us, infants are only one afternoon a week and so on.

I would be VERY concerned about the clinic if I had to tell them to wash.

I will also say it's comforting to hear everyone say how stressful the clinic visit is. We're new to this and yesterday we had both the regular pediatrician visit for regular vaccines, then the clinic & PT. I cried myself to sleep twice last night and cried all the way to work today. It's good to know that my reaction isn't all that out of the ordinary.

It's comforting, but I wish none of us were going through this.

 

[CJPsMom]

Yikes about the not washing at the clinic! I worry about it at our pediatrician's office - they seem a little too relaxed (like putting us in a room that hadn't been cleaned last visit), but our CF clinic is completely on top of that. We have signs for which rooms are for us, infants are only one afternoon a week and so on.
<br />
<br />I would be VERY concerned about the clinic if I had to tell them to wash.
<br />
<br />I will also say it's comforting to hear everyone say how stressful the clinic visit is. We're new to this and yesterday we had both the regular pediatrician visit for regular vaccines, then the clinic & PT. I cried myself to sleep twice last night and cried all the way to work today. It's good to know that my reaction isn't all that out of the ordinary.
<br />
<br />It's comforting, but I wish none of us were going through this.

 

[Randy]

CF patient here, I'm 19 and take myself to clinic for check-ups. Let me assure you, it is just as stressful for the patient as for the parent! The week leading up to the checkup is always a very stressful time for me. Talk of tubes is the scariest--I've avoided them so far. The doctors want you to gain weight all the time, that is mentioned every visit and will never not be mentioned--I've come to simply expect it. Sometimes I wonder why I even bother going for checkups when they simply say the same thing every time, but I am part of the study in Madison so it's good for them to get my height and weight and PFTs and blood...