How is your clinic run?

[MichaelL]

I go to a very large adult CF clinic. They have different days of the week for cepacia, people on IV meds, GI issues and everything else (the big clinic!). You have an assigned appointment time although I think people don't always pay attention to their time -- some show up early, others late. They also have unscheduled drop ins (e.g., people who are sick and need to see the doctor).

The clinic does not have enough exam rooms. Once all the rooms fill up, you may be in the waiting room for a while. Other than spirometry, everything is done in the exam room. For people with certain infections (e.g., MRSA), they bring a portable spirometry device to you in your room. Everyone that comes in the room has to put on a gown. The gowns are changed for each patient seen and put on immediately before entering the room. I usually see the nurse, spirometry, resident, dietician if needed and then the doctor. The nurse draws blood at the end.

I am currently going to the IV clinic, which is much smaller. I usually get there around 8:45 in the morning. On a good day, I might leave at 11:00 AM or so. On a bad day (e.g., put TPA in my PICC line), I may leave at 2:00 PM. When I was in the big clinic, my worst experience was arriving at 9 AM and leaving at 6 PM. This was very unusual and I would normally be there 3 to 4 hours.

The CF team works very hard -- especially during the big clinic. Because I go every two weeks, all the doctors and staff know me well. I feel I get a good amount of time with them.

 

[markinohio]

I had an appointment yesterday. My appointment time was 1:00 and I was there by 12:45. We do sit in the waiting room for a short time, but masks are available upon arrival. I was taken to the exam room and saw the nurse, social worker, RT, dietician and doctor and was out of there by 2:15. I did not have an X-ray or PFT scheduled for that day. PFT and X-ray have thier own departments. I can understand the concern about contamination in the waiting room, but, in my opinoin, we come in contact with many things people touch at the doctor's office before and after our appointment (ie, elevator buttons, door handles, counters, etc). I think washing my hands and not touching my face is the best way to avoid most comtamination possiblities.
Mark

 

[Ratatosk]

I understand one can't live in a bubble and that there are germs everywhere-- grocery stores, school, work, shopping malls and the importance of handwashing and avoiding touching ones face; however, our issue was primarily with 15-20 people wcf crammed into a waiting room, some with productive coughs, some visibly ill and culturing who knows what.

 

[Printer]

In today's mail, I received a card from my CF Center.
Cystic Fibrosis Night. Social Hour. Dinner.
The back side if this notice reads as follows:

We follow Cystic Fibrosis Foundation Infection Control Guidelines. Because of the potential risk posed to the patient by the possible spread of bacteria, we regret that we are unable to invite patients with CF to attend this event.

I think that this card is addresses the topic of this thread.

Bill

 

[LookingforPeace]

Bill. Sounds like we are seen at the same clinic! Or a clinic with the exact same guidelines. These stories are horrific. I stay far away from anyone with CF period. My clinic gives us the option of going into a waiting room for 30 second while my nurse comes to get us. I just stand around and walt, get weighed, put in my room, PFT's, blood in clinic, X-rays if necessary. All our results are pulled up on the computer. Gowns are worn. And we are separated based on bacteria. People with staph do their PFTS in one room. Pseudo in another. And people with Cepetia come on a completely different day. Love my CF Team.

This is very educational thank you for posting this.

 

[Printer]

Peace:

I'm going to Boston Childrens

Bill

 

[SaraNoH]

My CF clinic is at the UMC, and is only "open" on Mondays. The Pediatric an Adult wings are on opposite ends of the room/hall thingy, but the actual CF clinic is in the Peds part because they don't have an adult program.

-You have an appointment, wait 10-20 mins depending. It's always very empty in the waiting room.
-Vitals taken at the "vitals" station
-Wait in your room for RT.
-RT comes in, takes you to the PFT room.
-Go back to your room, wait some more.
-Eventually one of the doctors, the nurse, the social worker, and sometimes the dietician will come in. There's not really an order to who goes in first it seems. And of course because it's UMC there are students, but not nearly as many as there used to be.
-At the end the nurse comes back and collects or swabs for a sputum sample.
-All labs (blood, xray, etc) are done at separate facilities. DO NOT let them send the sputum to where ever they want because you will be charged about $300 for a "hospital" fee. I picked a huge fight with them about sending it to the right, normal lab which costs a fraction of that.

It takes about 3-4 hours. Longer than I'm used to with my old doctor, but not as bad as the clinic used to be 10+ years ago. Overall, as far as waiting etc it's really not that bad. Everyone is very nice etc, it's just that the care is kind of lacking... like, "We don't really know what to do with you..." We never really get into the meat of things, it's just the same old same old every time. I guess you could say it's not progressive, just stagnant. I'm always thinking, "what's the next step?" while they're still reading over the manual for what's going on now. Also, I've never ever had anyone comment to me about what my culture or blood values are. I'm paying for the labs, will you please let me know if I'm growing freaking Nocardia again?!

 

[regina65]

My clinic is very organized . I have cepacia so I have a mask on before I get there. They take me right and put me in a room on the other side from the other patients. Im not suppose to touch the counters for my protection and others

 

[semnle34]

I go to the Joe DiMaggio CF Center in Hollywood Florida. It is an amazing clinic. Every staff member is so sweet and does anything and everything they can to make sure all their patients have everything they need. The appointments are also scheduled seperately for cepacia and non cepacia patients too. While there I usually have a PFT & sputum culture done by a Resp Therapist, then see a nutritionist, social worker then the doctor. Its usually at least a 1.5-2 hour ordeal but it goes by pretty fast and you get plenty of time with the doctor. I highly recommend my center to anyone in South Florida looking for a dedicated CF Center. Plus they are up to date on every single med on the market, whats coming out and what's in the works.

 

[Printer]

My Clinic is Boston Children's. They DO NOT HAVE A WAITING ROOM. As soon as you check in you are taken to a exam room. In there you will see anyone on the CF Team that you are scheduled/want to see. PFT's, blood. sputum, etc are all taken in this room. You had better bring your own reading material and even tissues, these rooms are bare. If you need x-rays, a call in made before you will be sent to that dept. When you get there, a x-ray room has been cleaned and waiting for you with your name on the door. The exam room is cleaned prior to your arrival and cleaned again prior to the next patient entering.

I'm now clear that Boston Children's is the gold standard oh proper CF care.

Bill

 

[JustaCFmom]

I ask the secretary at our clinic to e mail me the lab results. That seems to be working. I just have to remember to call and ask.
As far as lab stuff, the doctor explained to me that they process the sputum cultures in a special way that the regular labs don't do. Are you sure your lab is treating your sputum cultures properly?

Bill, you sound like you have a top notch clinic. I assume it is an adult clinic. I do bring activities for my 9 year old but it is a challenge to keep him busy for at least 2 hours...

I want to thank everyone for their imput on this. It will take a while to make changes here, but I hope they will happen. I am not so pushy, but I will have to be to protect my kids health.

-All labs (blood, xray, etc) are done at separate facilities. DO NOT let them send the sputum to where ever they want because you will be charged about $300 for a "hospital" fee. I picked a huge fight with them about sending it to the right, normal lab which costs a fraction of that.

It takes about 3-4 hours. Longer than I'm used to with my old doctor, but not as bad as the clinic used to be 10+ years ago. Overall, as far as waiting etc it's really not that bad. Everyone is very nice etc, it's just that the care is kind of lacking... like, "We don't really know what to do with you..." We never really get into the meat of things, it's just the same old same old every time. I guess you could say it's not progressive, just stagnant. I'm always thinking, "what's the next step?" while they're still reading over the manual for what's going on now. Also, I've never ever had anyone comment to me about what my culture or blood values are. I'm paying for the labs, will you please let me know if I'm growing freaking Nocardia again?!

 

[Printer]

Obviously, I am a adult and I see a Doctor who specializes in adult CF patients. While I am in clinic, I see parents with their children on the same floor at the same time going to see their CF Doctor The way that they are treated is the same as I get, check in, go into an exam room, etc.

I would suggest, if you are not happy with the way your clinic is run, have them call Boston Children's.

Bill

 

[Jane]

We have always been very happy with our care at Boston Children's too. It is very scary to read what happens at other centers. Who's job is it to make sure CFF protocol is followed at clinics? Wow.

By the way Bill- the tissues are up in the cabinets. Everyone gets their own box!

 

[azdesertrat]

I guess I don't go to a 'clinic'.
Whenever I have CF issues, I see either my CF Pulmonologist or my Transplant doctor.
It strikes me as kind of risky to go to a CF clinic with no appointment; especially if you have to sit around for 3-4 hour waiting to be seen. That's an awful lot of time to be exposed to others with some that may have some communicable problems.
I hope you at least wear a mask while you're waiting. I wear one whenever I go to ANY hospital, clinic or doctor's office. I wear one pretty much wherevever there is a chance I may pick up something I don't want. Sometimes, like in the flu season, I'll even wear one while in line at the pharmacy.
Usually, I have little to no wait when I see my CF Pulmonologist. I really like & appreciate that.

 

[Printer]

Jane:

Everyday I learn something new.

Thanks
Bill

 

[RachElizza]

I go at an appointed time. I check in at the front desk and an immediately taken to an exam room. I will remain in that room until my appointment is completed. PFT's. blood work etc are done in this room. The Doctor also comes into this room. Everyone coming in the room observes "contact precautions" (gown and gloves). If I need to go for x-rays, that room is "prepared" before I leave the CF Clinic.

The exam room is very spartan, no magazines, newspapers or pamphlets.

You should expect nothing less on the part of your clinic. It is your health that needs to be protected.

Bill

Wow! This sounds like an ideal clinic visit. I have never had an experience like this.

I am always left in the waiting room for at least an hour, usually longer. After I am taken back to a room no one observes contact precautions. Sometimes I see just a nurse practitioner and they try to send me on my way. I am constantly having to say that I haven't seen the nutritionist, social worker, or even the doctor!