first CF Clinic Appt coming up

B

bmombtoo

New member
Hi everyone,<br>
<br>
I got an official looking letter from John Hopkins Hospital today,
even printed on orange colored paper (and thank you for choosing
Hopkins for your health care needs). Josh's first clinic
appointment is this coming Wednesday. He should bring his hospital
card and picture ID. The boy is 12 he has no picture ID, so mine
will have to do.<br>
<br>
Opening the letter brought tears to my eyes because its so
official. Besides worrying and trying not to cry (my therapist
encourages tears by the way), is there anything special I should
expect or door for this first visit as a CF patient? Dad can't go
because he has missed so much time already with his own appts (one
year post chemotherapy). My sister is going with me.<br>
<br>
I know I should take a paper and pencil. What should I expect? His
mutation panel isn't back yet I don't think. I know he has ABPA and
maybe a few new polyps. Should I expect that he will start new
medications specifically for CF? and if so What? I know each case
is different, but any standard or routine meds?  I have him on
the nebulizer twice a day with albuterol. I read somewhere on here
about pulmozyne and I think the CF nurse mentioned tobamycin for
ABPA. I think I need a better nebulizer,like a Pari.. Ours is the
cheap one they carry in some local pharmacies, a Sunmark or
sunplus.  Should I expect to get a vest or will I be hitting
his back?<br>
<br>
Okay, I think You get a good idea of how my mind is spinning with
all of this. Sooooooooooo HELP!!!!!
 
B

bmombtoo

New member
Hi everyone,<br>
<br>
I got an official looking letter from John Hopkins Hospital today,
even printed on orange colored paper (and thank you for choosing
Hopkins for your health care needs). Josh's first clinic
appointment is this coming Wednesday. He should bring his hospital
card and picture ID. The boy is 12 he has no picture ID, so mine
will have to do.<br>
<br>
Opening the letter brought tears to my eyes because its so
official. Besides worrying and trying not to cry (my therapist
encourages tears by the way), is there anything special I should
expect or door for this first visit as a CF patient? Dad can't go
because he has missed so much time already with his own appts (one
year post chemotherapy). My sister is going with me.<br>
<br>
I know I should take a paper and pencil. What should I expect? His
mutation panel isn't back yet I don't think. I know he has ABPA and
maybe a few new polyps. Should I expect that he will start new
medications specifically for CF? and if so What? I know each case
is different, but any standard or routine meds?  I have him on
the nebulizer twice a day with albuterol. I read somewhere on here
about pulmozyne and I think the CF nurse mentioned tobamycin for
ABPA. I think I need a better nebulizer,like a Pari.. Ours is the
cheap one they carry in some local pharmacies, a Sunmark or
sunplus.  Should I expect to get a vest or will I be hitting
his back?<br>
<br>
Okay, I think You get a good idea of how my mind is spinning with
all of this. Sooooooooooo HELP!!!!!
 
B

bmombtoo

New member
Hi everyone,<br>
<br>
I got an official looking letter from John Hopkins Hospital today,
even printed on orange colored paper (and thank you for choosing
Hopkins for your health care needs). Josh's first clinic
appointment is this coming Wednesday. He should bring his hospital
card and picture ID. The boy is 12 he has no picture ID, so mine
will have to do.<br>
<br>
Opening the letter brought tears to my eyes because its so
official. Besides worrying and trying not to cry (my therapist
encourages tears by the way), is there anything special I should
expect or door for this first visit as a CF patient? Dad can't go
because he has missed so much time already with his own appts (one
year post chemotherapy). My sister is going with me.<br>
<br>
I know I should take a paper and pencil. What should I expect? His
mutation panel isn't back yet I don't think. I know he has ABPA and
maybe a few new polyps. Should I expect that he will start new
medications specifically for CF? and if so What? I know each case
is different, but any standard or routine meds?  I have him on
the nebulizer twice a day with albuterol. I read somewhere on here
about pulmozyne and I think the CF nurse mentioned tobamycin for
ABPA. I think I need a better nebulizer,like a Pari.. Ours is the
cheap one they carry in some local pharmacies, a Sunmark or
sunplus.  Should I expect to get a vest or will I be hitting
his back?<br>
<br>
Okay, I think You get a good idea of how my mind is spinning with
all of this. Sooooooooooo HELP!!!!!
 
A

anonymous

New member
I would expect that he would be put on a mucolytic whether its Pulmozyme or Mucomyst. Pulmozyme being the more standard of the two but MucoMyst has gained popularity lately.

Its very likely that he will end up getting a Vest. My clinic also loved the Acapella and pretty much all the patients who were able to use one, had one. (usually in addition to having a Vest)

As for nebulizers, usually either the Devilbiss Pulmoaide or Pari Proneb are reccomended compressors along with the Pari LC Plus nebulizer kit.
 
A

anonymous

New member
I would expect that he would be put on a mucolytic whether its Pulmozyme or Mucomyst. Pulmozyme being the more standard of the two but MucoMyst has gained popularity lately.

Its very likely that he will end up getting a Vest. My clinic also loved the Acapella and pretty much all the patients who were able to use one, had one. (usually in addition to having a Vest)

As for nebulizers, usually either the Devilbiss Pulmoaide or Pari Proneb are reccomended compressors along with the Pari LC Plus nebulizer kit.
 
A

anonymous

New member
I would expect that he would be put on a mucolytic whether its Pulmozyme or Mucomyst. Pulmozyme being the more standard of the two but MucoMyst has gained popularity lately.

Its very likely that he will end up getting a Vest. My clinic also loved the Acapella and pretty much all the patients who were able to use one, had one. (usually in addition to having a Vest)

As for nebulizers, usually either the Devilbiss Pulmoaide or Pari Proneb are reccomended compressors along with the Pari LC Plus nebulizer kit.
 
R

Ratatosk

Administrator
Staff member
I always get sidetracked and forget things if I don't write it down, so bring along a list of medications he's currently on, dosages, times of day he gets it -- they probably have the information, but they'll probably ask you to verify it. Bring along a list of questions you may have -- do you have questions regarding meds -- nebulized, enzymes, vitamins... What about medical equipment -- nebulizers, vests...

Bring along antibacterial gel or wipes -- clinic waiting rooms, clinics are germy places. Try not to touch the arms of chairs, door knobs, elevator buttons, or if you do -- use antibacterial stuff or wash your hands asap. If there are any other CFers in the clinic/waiting room maintain at LEAST a 3 foot distance.

They'll probably do a throat or sputum culture to see if he's growing anything. Bloodwork to check vitamin levels. Maybe xrays....

Depending upon what he may or may not be growing -- he could be put on Tobi. Copays could be high, so if you get a script for that also ask for information on the Tobi Foundation. Could be put on vitamins, antibiotics, bronciodialtors such as albuterol or atrovent. Maybe pulmozyme.... Zithromax is a common med, not for infections, but for inflammation...
 
R

Ratatosk

Administrator
Staff member
I always get sidetracked and forget things if I don't write it down, so bring along a list of medications he's currently on, dosages, times of day he gets it -- they probably have the information, but they'll probably ask you to verify it. Bring along a list of questions you may have -- do you have questions regarding meds -- nebulized, enzymes, vitamins... What about medical equipment -- nebulizers, vests...

Bring along antibacterial gel or wipes -- clinic waiting rooms, clinics are germy places. Try not to touch the arms of chairs, door knobs, elevator buttons, or if you do -- use antibacterial stuff or wash your hands asap. If there are any other CFers in the clinic/waiting room maintain at LEAST a 3 foot distance.

They'll probably do a throat or sputum culture to see if he's growing anything. Bloodwork to check vitamin levels. Maybe xrays....

Depending upon what he may or may not be growing -- he could be put on Tobi. Copays could be high, so if you get a script for that also ask for information on the Tobi Foundation. Could be put on vitamins, antibiotics, bronciodialtors such as albuterol or atrovent. Maybe pulmozyme.... Zithromax is a common med, not for infections, but for inflammation...
 
R

Ratatosk

Administrator
Staff member
I always get sidetracked and forget things if I don't write it down, so bring along a list of medications he's currently on, dosages, times of day he gets it -- they probably have the information, but they'll probably ask you to verify it. Bring along a list of questions you may have -- do you have questions regarding meds -- nebulized, enzymes, vitamins... What about medical equipment -- nebulizers, vests...

Bring along antibacterial gel or wipes -- clinic waiting rooms, clinics are germy places. Try not to touch the arms of chairs, door knobs, elevator buttons, or if you do -- use antibacterial stuff or wash your hands asap. If there are any other CFers in the clinic/waiting room maintain at LEAST a 3 foot distance.

They'll probably do a throat or sputum culture to see if he's growing anything. Bloodwork to check vitamin levels. Maybe xrays....

Depending upon what he may or may not be growing -- he could be put on Tobi. Copays could be high, so if you get a script for that also ask for information on the Tobi Foundation. Could be put on vitamins, antibiotics, bronciodialtors such as albuterol or atrovent. Maybe pulmozyme.... Zithromax is a common med, not for infections, but for inflammation...
 
F

folione

New member
To add to what's already been suggested: take all of your questions written down with you and do not be afraid to ask every one of them. And ask them as many times as it takes until you truly feel like you understand what they are saying. I've found that my son's CF doctors are extremely patient and understanding about answering each and every question we have - but that sometimes they don't give complete answers that explain to my satisfaction why they plan to do some procedure or start some medicine. I don't take their recommendations as gospel - if the Dr. wants to add medicines or procedures/tests I always press them to explain the risks and benefits. Just because the Dr. wants to prescribe something doesn't mean you have to agree.

Take something to eat and drink and read - you might be there awhile.
 
F

folione

New member
To add to what's already been suggested: take all of your questions written down with you and do not be afraid to ask every one of them. And ask them as many times as it takes until you truly feel like you understand what they are saying. I've found that my son's CF doctors are extremely patient and understanding about answering each and every question we have - but that sometimes they don't give complete answers that explain to my satisfaction why they plan to do some procedure or start some medicine. I don't take their recommendations as gospel - if the Dr. wants to add medicines or procedures/tests I always press them to explain the risks and benefits. Just because the Dr. wants to prescribe something doesn't mean you have to agree.

Take something to eat and drink and read - you might be there awhile.
 
F

folione

New member
To add to what's already been suggested: take all of your questions written down with you and do not be afraid to ask every one of them. And ask them as many times as it takes until you truly feel like you understand what they are saying. I've found that my son's CF doctors are extremely patient and understanding about answering each and every question we have - but that sometimes they don't give complete answers that explain to my satisfaction why they plan to do some procedure or start some medicine. I don't take their recommendations as gospel - if the Dr. wants to add medicines or procedures/tests I always press them to explain the risks and benefits. Just because the Dr. wants to prescribe something doesn't mean you have to agree.

Take something to eat and drink and read - you might be there awhile.
 
B

Buckeye

New member
Your first appointment to the CF clinic can be LONG so be prepared
for that.  Maybe take along a small snack for yourself and son
in case you don't have time to grab lunch.  Our first
appointment from beginning to end was six hours and I was pretty
cranky by the end of it.  Some of the tests they performed
that day were blood chemistry tests, throat cultures, chest x-ray,
sinus ct-scan and then a stool test.  I think at the first
visit they are trying to establish a baseline for your kid so that
is why they do a whole battery of tests and take a full history.
 You might want to type up a medical history sheet for your
son and bring it with you so you know dates of hospitalizations,
current medications, etc for when they ask.  On a brighter
note our 2nd appointment took less than an hour.  
 
B

Buckeye

New member
Your first appointment to the CF clinic can be LONG so be prepared
for that.  Maybe take along a small snack for yourself and son
in case you don't have time to grab lunch.  Our first
appointment from beginning to end was six hours and I was pretty
cranky by the end of it.  Some of the tests they performed
that day were blood chemistry tests, throat cultures, chest x-ray,
sinus ct-scan and then a stool test.  I think at the first
visit they are trying to establish a baseline for your kid so that
is why they do a whole battery of tests and take a full history.
 You might want to type up a medical history sheet for your
son and bring it with you so you know dates of hospitalizations,
current medications, etc for when they ask.  On a brighter
note our 2nd appointment took less than an hour.  
 
B

Buckeye

New member
Your first appointment to the CF clinic can be LONG so be prepared
for that.  Maybe take along a small snack for yourself and son
in case you don't have time to grab lunch.  Our first
appointment from beginning to end was six hours and I was pretty
cranky by the end of it.  Some of the tests they performed
that day were blood chemistry tests, throat cultures, chest x-ray,
sinus ct-scan and then a stool test.  I think at the first
visit they are trying to establish a baseline for your kid so that
is why they do a whole battery of tests and take a full history.
 You might want to type up a medical history sheet for your
son and bring it with you so you know dates of hospitalizations,
current medications, etc for when they ask.  On a brighter
note our 2nd appointment took less than an hour.  
 
R

Ratatosk

Administrator
Staff member
We bring along a portable DVD player with dvds, books, toys, snacks, juice. Last appointment I should've brought along lunch for DS because we were there from 7:45 to 12:30. DH and I both bring along a book or magazine, coffee or bottle of water. Hospital waiting room magazines and books --- ISH!

So you you may want to pack a backpack with stuff in it to keep from being too bored.
 
R

Ratatosk

Administrator
Staff member
We bring along a portable DVD player with dvds, books, toys, snacks, juice. Last appointment I should've brought along lunch for DS because we were there from 7:45 to 12:30. DH and I both bring along a book or magazine, coffee or bottle of water. Hospital waiting room magazines and books --- ISH!

So you you may want to pack a backpack with stuff in it to keep from being too bored.
 
R

Ratatosk

Administrator
Staff member
We bring along a portable DVD player with dvds, books, toys, snacks, juice. Last appointment I should've brought along lunch for DS because we were there from 7:45 to 12:30. DH and I both bring along a book or magazine, coffee or bottle of water. Hospital waiting room magazines and books --- ISH!

So you you may want to pack a backpack with stuff in it to keep from being too bored.
 
You must log in or register to reply here.
Top