WHAT DO YOU DO

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Seana30

New member
Today was VERY frustrating!

It took me 8 hours and lots of driving around town to find a place to do my sweat and DNA test. I finally found a hospital that will do the tests on Monday.

El Paso, TX has no CF center. Courtney travels 800 miles to San Antonio for her clinic. She father is military so we do not pay for any of the travel expenses. She also has a pulmonary and gastro doc here in El Paso.

I am concerned because if my tests come back that I do have CF my insurance WILL NOT pay for me to travel to a CF center.

How many of ya'll do not have a CF center in your town, and if not, what do you do?

Thanks!

Seana
 
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coltsfan715

New member
We just got an Adult CF Center in town, but before that I went to a pulmonoloist with experience treating CF patients. I am not sure if you would have that option or not.
I hope that the tests come back negative though and that you do not have to worry about it.


Take Care, Lindsey
 
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anonymous

New member
Don't worry yourself about it now. Wait until you get the results and then if needed you will be able to figure something out.
 
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anonymous

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

If I didn't have a CF center near me, I would move near one and I know my parents would have done the same if I was a minor.



In fact, I'm considering moving to Minnesota so I don't just go to ANY CF center, but one of the best in the country.</end quote></div>

This is a good thought but how does one judge just which CF centers are the best?
 
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anonymous

New member
I travel from Bozeman, Montana to the adult clinic at National Jewish in Denver. Since my diagnosis was so late I was eager to work with a group of people who knew what to do with/for me. The local families I have met drive 140 miles east for the pediatric clinic in Billings, MT with a doctor from the children's CF program at Children's Hospital in Denver.
 
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Seana30

New member
Thank you all for the responses.

Moving in not an option for us right now. My husband owns a business out here and he has to be there on a daily basis.

I guess if the tests come back that I do have CF I can see if there is a adult center in Alburqurque (sp?) NM. That is only about a 3 1/2 hour drive from here.

Are there alot of ADULT CF centers?

Seana
 
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Lance2020x

New member
I don't know how many there are. I've always driven to Nashville to
the Vanderbilt clinic (about 2-2 1/2 hours away). Luckily that
clinic has a childrens CF clinic AND an adult clinic on separate
sides of the building.
 
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Allie

New member
I highly suggest what we did- don't go. Ry had a pulmo as his main doctor, with a panel of people we could call and get appts with, like a gastro, rheumo, deitician, etc. We picked the people WE liked. In Ry's case, the care was much better. If he was sick, we got an appt the same day or the next morning, no long waits. Ry's pulmo kept up on CF care, and his PFts and weight were never more stable. Until the cepacia hit, he was doing fantastic.
 
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Debi

New member
We have a cf center, but I do not like the docs there. Very condescending. They have developed a regimen and they don't want to adapt it to each individual's needs. I have gone to the same pulmonologist for about 15 years. He is very up on cf and is willing to be creative in trying new treatments. Understands both the physical and emotional sides of having cf. Is available to take calls, and has even given me his home and cell phone numbers to call if I ever need to. In the 15 years, I have only called him at home once. All I know is I have had a great and a long life under his care. He is very focused on qualify of life over quantity. I would not get hung up on having to go to a cf center to get good care. Hopefully you will not even need to worry about this!

Debi
54 w/cf
 
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anonymous

New member
We drive 2 hours to our cf clinic but it is well worth it. They are wonderful and we couldn't be happier with the care. We never have to wait. We get right in once we get there and can get same day appointments if we need to. We tried some private pulmo's before and they knew very little about CF and basically said just get your affairs in order because adults with CF don't have a chance. Of course we left and never went back to them. The cf clinic has been great and we are glad we go to them. We pay for the travel expenses.
 
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Ratatosk

Administrator
Staff member
We travel 3 1/2 hours a couple times a year to go to the our CF center in the City and the doctors are usually at the hospital or doing rounds in the morning, so the earliest appointment available is 2 p.m. Most of the time we schedule an appointment on a Friday afternoon, leave from home that morning and then spend the weekend at a hotel, do some shopping, meet friends or relatives who live there, go out to eat. Sometimes in the summer, just DH and I go by ourselves and we go in the middle of the week, go to the children's museum, zoo, brewery... We pay for our own travel expenses -- we tend to use priceline and have stayed in some pretty nice hotels for not a whole lotta money.

Some people prefer leaving home Sunday afternoon or evening and scheduling appointments for Monday or Tuesday.
 
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anonymous

New member
Seana,
Just to let you know there is an adult center in Albuquerque. I don't know how good it is, but I do know they have one.
 
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alwaysursamor

New member
Is your husband current;y active in the military? If so why will
they not pay?  This is very important b/c  Im bout to
marry and hes in the military?
 
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Seana30

New member
Thank you all so much for the responses.

Good to know there is an adult clinic in Albuquerque!

My hubby now is not military. My first husband, my daughter's father, is military. That is why they receive military benefits.

I guess my best bet is to wait and see what the test results are, and if needed check out all the doctors here in El Paso and make a visit to NM and check out the clinic there.

THANKS AGAIN EVERYONE!

Seana
 
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JazzysMom

New member
I travel almost 3 hours to my CF clinic. I dont have a local doctor of any sorts. I ddi use a local internest to has seen me for GI problems in emergencies, but I dont go to him regularly.
 
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anonymous

New member
I have just recently started to go to a clinic. There is not one in my state, so I saw a private pulmo. guy for about 20 something years. I still see him, but I decided I would also go to a clinic too. I drive about 6 hours (one way) to clinic. I don't know if I am going to keep this up though. I had been to my clinic probably about 4 times and I cultured PA. I am sure it is just bad timing. But, I went 30 years without even a trace of it, and now I have it. Oh, well. Anyway, I've always been to a private guy, and I will probably stay that way. I may got to the clinic once a year in case down the road I do get sick.... I'm still deciding.
 
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