Transitioning from peds to adult

[keegia]

Hello all,

I am 23 years old with cf, mutation unknown. I was diagnosed at 9 years old and went to CHOP in Philly for about 2 years before I started to see a pediatric pulmonologist specializing in cf in my area.

My doctor was great and said he would see me until I was 26 but I was always treated like a child there, even once I hit "adult" age. I felt as though they didn't understand that I had a life, a job, I went to college and they expected me to be able to drop everything at the drop of a dime just because my PFTs dropped a little bit and they felt I needed to be hospitalized. I decided to transition to an adult pulmonologist, hoping they would be more accommodating to an adult life.

About a week ago, I wanted to start on IV antibiotics for a tune-up because I always get sick around this time of year. In order for my insurance to cover IV, I need to be admitted for 24 hours and sent home on them. I ended up in the hospital for 4 days and never once saw my adult doctor. I saw a pulmonologist who was unfamiliar with cf and infectious disease were the ones ordering my meds and had me on 5 things at once!

Now I am home on IV and still haven't seen my adult doctor and couldn't get an appt with her until 3 weeks after my IV start date. My pediatric doctor would have seen me at least once in his office by now.

I guess my question is...is this how the adult cf world works? I know I wanted more freedom, but I also want to deal with doctors who know cystic fibrosis and my specific case. Am I the only one dealing with this sort of bad transition? Or did my pediatric doctor hold my hand too much?

Also, anyone in the Philly/Allentown area have any suggestions for cf doctors? I have an appt at the drexel center in October.


Thanks in advance for any advice/input!

 

[windex125]

That sounds absolutely horrible, I feel bad that you are having such bad care, for you not to see a doctor at all is just terrible. When you did get transferred to a adult doctor did you go over specific care and how things work for you IV wise insurance wise ? I would demand a appt. immediately this is not acceptable in my eyes for you to do IV's at home and not see the doctor for 3 weeks, When I am on IV's I see the doctor prior and then weekly as my needle gets changed at home by my nurse, but I still see my doctor weekly. I think you need to demand a appt. and not accept anything less. Pat/CF-59

 

[stephen]

keegis,

From my experiences this is NOT how the Adult CF world works!

While I’ve never attended a Pediatric CF Center, I have attended three different Adult CF Centers. Each one of them could not have been more caring or responsive. (I switched centers only for convenience.)

At my present center when I call, or text, my doctor or the CF Coordinator, a response is almost always received the same day - although it might be late in the evening. If I have a problem and want to be seen, I can often get an appointment the same day (once being fit in after 9:00 PM), but NEVER having to wait passed the third day.

There were a number of times when, for various reasons, I wasn’t pleased with a doctor I was using. Living in the New York City area, there are many heath care facilities and providers, and I always found another doctor more to my liking.

It sounds like you live near a populated urban area where you too should have choices of where to be treated and which doctors to use.

We all need to remember that it’s OUR health we’re dealing with. Every patient has different needs. If we’re not pleased with the care we’re receiving, we owe it to ourselves to try to find another provider who is more suited to our needs and can provide better care for us.

Be proactive!

 

[TreasureGoddess]

http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/ Keegia, go look on the cff.org website and find a cf care center near you. Even seeing one a bit further away would be better than having bad care. Adult centers give amazing care also, so don't settle for less. I agree with Stephen, be proactive! It's your health and your life and you deserve good care that is responsive to your needs. Shop around and you will find something.

 

[MichaelL]

I was diagnosed as an adult, so I've never been seen by a pediatric CF doctor. However, I would agree with the comments above that this doesn't sound like typical care. When I'm in the hospital, I sometimes see one of the regular CF doctors and other times I see residents. For my CF program, the CF doctors spend their time with the sickest patients. However, the residents are working closely with the CF doctors and consulting with them about my situation.

I also would never have to wait that long to see the doctor. I usually email the CF nurse when something comes up. I then hear back from her or a doctor within a day. They have problems with our clinic being very crowded, but they are accommodating to people who are sick. In non-emergency situations, they would ask me to wait until the next clinic day, which would be no longer than a week's wait.

 

[BikerEd]

No. That is not how is supposed to be. I transitioned at 28,DX at 7 weeks.I am assuming that arenot seen at an Adult CF Center. Having a local doctor is fine but I recommendthat you reach out and try to connect with a center and be seen at least 2x a yearthere so when something like this happens they can handle it properly. Ipersonally go to Hospital of University of Penn and cannot say enough about howgreat the care is there; trust me I’ve seen my far share of clinics across thecountry. You don’t always need to go there when you are a little sick either. Ihave called or Emailed and received a response usually that day if not minutes later.We discus what’s going on and go from there. If I need blood work or x-rays,etc... they can Email the orders to me and I can go to the nice little outpatientfacility in my area and not have to worry about picking up god only knows whatfrom whoever is the waiting room hacking their lungs out onto my arm. You mentionedChildren’s so I guessing you live in PA as well. Upenn and Drexel in Phillyhave adult clinics and there is one in Hersey at the Penn State Medical Centeras well.

Best of Luck
Ed

 

[Jet]

The group is right, you need to get into a Adult CF center. Mine in Ohio is still at Childrens but the clinical teams are segmented into peds and adult patients. The clinical team would be involved in any inpatient tune ups.

 

[cam]

I'm 35 yr old cfer it was and still is horrible to trasfer to adult cf cause were i go they only have one real cf specialist and bunch of. drs from med team that r not any good all they do is what last doctor did and have no bed side manner at all and i never c the specialist while in hospital and tje adult doctor whp they got doin the adult cfers came from sleep study what does he know bout cf he is horrible every question i ask he leaves and calls my old ped octor its crqzy I'm goin to Pittsburgh on 23rd so i hope they r better and care more and actually do care and want to help if any one goes to upmc set me know what I'm goin to expect thank u