Private Pulmonolgist or CF Clinic

[anonymous]

Hi,
I was just reading another Topic and it was brought to my attention that some of you go to Private Pulmonolgist instead of the CF Clinics. I have wanted to do this for a while because my CF clinic is not the best. My doctor also treats children and does not always know the answers that I ask being an adult. She is also not on top of the newest inormation, sometimes I can find out more coming to this site. I would love to hear the beneftis of going to a private pulmonogist vs a CF Clinic, also what questions should I be asking when I look for a Pulmonolgist to go to. Thanks

M, 30 w/CF

 

[anonymous]

I get so stressed out when we take DS to the CF clinic. The lack of protocol regarding germs -- community waiting room, close quarters. Also, because we're local a lot of times they get the out of towners thru a lot faster and we're left to cool our heels. Last time we had an appointment at 8 and didn't see anyone until 9:15 and we're usually sitting at the clinic for at least 4 hours on clinic day. We're treated like children -- as if our opinion doesn't matter. If we DARE ask a question, it's almost as if we're scoffed at. After the last appointment we're seriously considering bailing on the whole CF clinic experience altogether.

Also they seem to have all the patients on the same medications. We're the outcasts because we also see a doctor in another City who is very progressive, very proactive. Stresses cpt and keeping the lungs healthy. Local clinic is "you do CPT and nebs?"

The other doctor we see specializes in CF and one other genetic disease --, but is board certified as an pulmonologist and infectious disease expert. It's very rare that we wait in a waiting room for even a few minutes. We're in and out in a timely matter. He spends time with us going over treatment, medications, answers any questions we may have... As mentioned before -- local clinic is stressful.

Liza

 

[JohnnaMarie]

Liza:

The clinic you go to sounds TERRIBLE!! I could see why you would want to bail on the whole CF Clinic idea!! Is there any way you can go to another CF Clinic..or is there another one? I have never heard of such a bad one. I have a pretty good one. I go to the one in Omaha. It has an adult part now. I know the adult clinics are a newer thing. This one works well. I have no idea where you live, but I hope you can find a better one to go to. The Clinics are not supposed to be like that. I hope you can find a better place to go to.

Good Luck
<img src="i/expressions/rose.gif" border="0">

 

[lovingBenandCambree]

CF Clinic for me. It is all that I have ever done. It used to take hours and hours, but has gotten a lot quicker. I really like my docs and feel that they are all on board with what I feel I need. It is nice to be listened to and not treated as a child.

Emilee

 

[NoExcuses]

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[julie]

Only benefits Mark and I have really seen/had with the CF clinic is that there is a dietician on staff for clinic days and they are-(most of the time) the most knowledgeable group of medical staff to address CF issues, particularly if you are wanting a certain test or fighting your insurance company over something.

When we lived in San Diego for 2 years, Mark saw a Navy pulmonologist who was "training" to see CF patients. He was the best doctor Mark has EVER had!! Plus Mark really enjoyed him and didn't mind going to see him. He actually went in about every month. Only bummer was that we had to schedule to see a dietician separately, which can be a pain but we made it work. Although he was a GREAT doctor, he wasn't much help fighting our insurance company with some denials of supplements. For that, we made an appointment with a local CF clinic (we just visited them once in our two years there) and they addressed that particular issue.

If you prefer a private pulmonologist and think they handle your treatment and care very well... GO FOR IT!!!!! You can always have that CF clinic in your "back pocket" if you need it. The only time I personally discourage a private pulmo. is to parents who's children have just been diagnosed with CF and the parents/family is still so very new to the CF world and understanding everything involved with CF. It's important to get a full understanding first (at least in my opinion) and a CF center is the ONLY place you should go if you want to obtain accurate sweat test results. If you are past that point in your life... go with whatever doctor makes you comfortable!!

 

[Allie]

We're one of the ones that did the private pulmonologist thing. For us it was a "Well, the clinic is really far away, let's try this, and if it's not working, we'll go back." It ended up working much better. One of the really nice things was we could shop around and pick a pulomonologist, dietician, social worker, etc. That we liked. 1 BIG plus for us was it went from being hours away to being 15 minutes away, so if Ry got into trouble, they were right there.

It's a "to each their own" thing, but it worked best for us.