CF Clinic Vs Single Doctor

[tapestry]

I'd like to get some of your perspectives on which you prefer - care at a CF clinic or from an individual pulmonoligist. There's a CF Clinin here in Dallas but the soonest they can see my daughter is 4/14 and they only see patients on Tuesdays and Thursdays. If you have a genuine need to see the doctor any other day they send you to the ER. That seems a tad inconvenient to me. Now with the CF clinic there are resident pulmonoligists, a nutrionist and social worker, so you get all those benefits. But on the other hand there's an individual pulmonologist that's been recommended to us as excellent and having a lot of experience with CF. His office is open five days a week. But of course no nutritionist and social worker. Soooo what have you experienced with your own or your children's care? Do you prefer the CF clinic? Is it worth the extra hassel and distance? (I should add the CF clinic is a bit farther away from us).

Thanks,
~Tapestry~

 

[Emily65Roses]

I never had a family doctor who had any CF experience. The CF clinic is 45 minutes from home for me. I've gone to the same one for 21 years. I like it best there, but I've never had the option of a family care doc that has any CF experience. So I can say I like the CF clinic, but I don't have much of anything similar to compare to. I imagine this wasn't of much help.

 

[anonymous]

Tapestry, my husband has been seen at both a CF clinic with a nutritionist, social worker and all that good stuff. We have also been see at a local doctors office where the doctor had some CF experience. In one city we decided to go wth the local doctors office because it was a good fit for us and a good office. In another state that we lived in, we choose the CF clinic at a hospital because we liked the way they worked out better. You might have to try one out for a few months, then try the other and see which works best for you (if insurance will allow). One thing you might want to keep in mind that while your child is young, you may be more suited by a clinic that has all the other "clinics" in one office where you can be seen all in one visit in one day. As well as the fact that the social worker might be beneficial in assisting with any school issues that might arise and such thing. Those are just the things I would consider if it were me.

Julie (wife to Mark 24 w/CF)

 

[anonymous]

Tapestry,
Sorry to hear about your daughter's diagnosis but you should get the help she needs now. You are also being very proactive in learning all you can, that will help you and your daughter a lot. I would visit both the CF clinic and the individual pulmonologist perhaps for a few visits each to see what they have to say. I have two children, Sophia is three and a half and Jack is 19 months. They both have cf and we live in Houston. They go to Texas Children's. I know that the CF clinic told you that they see patients on Tuesday and Thursday's but they most likely would see you on another day if you child was ill. My children's cf doctor only sees cf patients on Mondays. If my kids do have a bad cough and I am concerned (with doesn't happen very often by the way, maybe twice a year) their cf doctor will see us or if he is unavailable another pulmonologist will work us in, but I have to be a little bit pushy to get the appointment. I have not needed the services of the social worker. I have also found the dietician at the clinic (not nutritionist, nutritionists are concerned with nutrition and dietician are concerned with calories!) advice to be not very helpful. They just push for fatty junk foods. I have been told to feed my kids candy and Cheetos in order for them to gain weight and limit fruits because they don't have many calories. Our dietician also has been out of the office on our last two visits we don't even see her regularly. You could find your own nutritionist outside of the clinic that might have some sound advice. Maybe others have found their dietician's advice to be helpful at the clinic that is just our two experiences with the dieticians we have met.

I know you said the soonest that the clinic can see you is 4/14, but you might not have gotten through to the right person at the clinic in making the appointment. One thing I have learned is you have to be persistent and don't take no for an answer if you think something needs to be done. I would call the cf clinic and ask for the name of the head pulmonologist at the clinic. Then ask to speak to his nurse. They will most likely give you the nurse's voicemail. Leave a message and explain your situation and that you want to see a pulmonologist preferably the head of the clinic ASAP.

I also have been meaning to respond to your question about daycare. It was recommended to us to keep Sophia and Jack out of daycare setting until they were about two. I am able to stay at home with them, so we didn't put them in daycare. But I have learned that you can't protect them from colds, and other illnesses. My daughter had four or five colds her first year when I tried to isolate her. You have to choose what works best for your family. Doctor's don't have all of the answers and they only make suggestions. We were also told that it would be a good idea to keep my daughter out of preschool when Jack was born with cf. I thought that was not fair to her since she LOVES the school environment. We went ahead and sent her to preschool and she and her brother have both been healthy and she goes to school 4 mornings a week. Also, my seven year old nephew was diagnosed a few weeks after my daughter when he was four. He had been in daycare most of his life. He had no problems what-so-ever with being in daycare. He stayed healthy, just had digestive issues.
Sharon, mom of Sophia, 3.5 and Jack, 19 months both with cf

 

[blindhearted]

I always had both since a very young age. I went to a CF Pediatric Clinic (with a complete team) at Duke (2 - 3 hrs from my home) and had a local Pediatric doctor. I was his first patient to ever have CF, so we learn about it together (with the help of Duke). I "lost" both doctors at the same time when I turned 21. So now I go to an Adult CF Clinic at Duke (every 3 months unless I need it sooner) with a full team (the socal worker is with both teams so he is the only one I have that's the same) and a local doctor who is a pulmonologist with mild to moderate experiance with CF. But I think I am his only patient with CF at this time. Since my CF Clinic is so far away, I find it's really important to have a local doctor (CF or non-CF) in case I get sick. Not just an ER doctor who changes from week to week. I feel better when I have someone who knows my case because no CF case is completely the same. The most important thing about having CF doctors and non-CF doctors (or two plumonologist) is that they communicate with each other and share information to best treat your CF. If they don't communicate, it can be very fustrating on the patient, so I find it very important. I had great communication between my pediatric doctors, but no so much with my adult doctors. But I'm working on it.

 

[anonymous]

I have a son who is 19 with CF. He was diagnosed at a Childrens Hospital and was seen in clinic there for the first 7 yrs or so - we had one primary dr we saw. She decided to go into private practice and we went with her and were always very happy-we found it easier to deal with one dr and one nurse. They seemed to know us better and were easier to get into see. If she was out of town they would see us at clinic. This past yr she decided to give up her CF patients because of the load and even though I understood her desire to cut back it was devastating to us. The clinic is good but we dont have that relationship there and of course they see him as an adult which he technically is but today for the first time they wouldnt let me sit in on the visit. Im sure there are reasons for this and I understand having some time with the patients alone so if there are some ?s they wouldnt ask in front of the parents. But I wasnt asked in but for the last few minutes. And he honestly would rather have me in there- which several of the patients expressed today. He had recently had to have a ct on his abdomen and I didnt feel I got those ?s answered. In one more yr we will have another transition to an adult clinic- this has been hard on him and me!! I guess I just needed to vent and I appreciate you listening. I agree that I would try both and see which fits best. We also have a dr we see in our home town- we are an hr away from clinic. One upside to a clinic I think we get in on the research studies better there. Thanks and good luck.

 

[spicyone18]

Tapestry, I have noticed in another one of your post you noted that you lived in dallas, I actually live in Plano but I go to the clinic at childrens in dallas so I know what you mean about it not being close! Anyways when I was growing up I went to the CF clinic but I also had a regular doc too. My regular doc was great I dont know how many CF patients if at all he had but he communicated great with the docs at clinic. He also went along with my moms instincts alot. Like my mom always knew when it was time for home IVs or hospitalzation. So if my mom took me in to the regular doc he always asked what she thought and she would tell him, then he would call ahead to the CF clinic and get there second opionion. Now that I am an adult I only see the CF doctors at clinic, yes it can be inconvient at times but they give me the best care. Like others have said having the social worker and what not being there are very helpful at times. So anyways thats a bit of my experience. Good luck with what ever you decide.

 

[anonymous]

We used to live in the Dallas area and we chose to go to Cook in Ft. Worth - They also have a CF center there but it was over an hour from our house North of Plano. We use his pediatrition as his primary but go to the CF Dr. once per quarter. We now have to drive over 3 hours to the CF center in Little Rock since we have re-located. We feel that it is very important that he be seen at a CF center since they deal with this daily and are more likely to be up-to-date on new things. Our Ped. also has a relationship with our CF Dr. which helps.

 

[Mockingbird]

Not sure if anyone's mentioned this, but Cf is more than a pulmonary disease. Lots of other stuff gets affected, too, especially as we get older. I agree that the CF clinics can be a bit inconveniant, but it's just something we have to put up with. I have seen a few doctors before away from the clinic who have experience with CF, and even they reccomended I go to the clinic. The thing is, the clinic always has the latest info on treatments, medications, and such. Also, the clinic has more... um, well I'm not sure what to call it, but like when I need sinus surgery, they set it up for me, get an ear-nose-throat doctor, schedule the surgery, etc. Or whenever I need a picc line, same thing. My advice is go with the clinic. You can still keep the pulmonary doctor in case you need an immediate appointment, or whatever, but you'll find the clinic really is necessary.

Jarod
22 w/cf

 

[Mockingbird]

Oh, and my CF clinic was quite a ways away, too (three hours.) And I did have just a regular family doctor in town in case i got sick or whatever, but for check-ups I always used the clinic. =-)

Jarod

 

[Purplelungs]

Yeah like Jarod said CF isnt just a pulmanary disease. Although you can have a great pulmo doc sometimes they arent trained well in CF and with cf if you get sick its not always a direct result that something is wrong with the lungs....so CF clinics having a team of people is really helpful.

I went to the Dallas CF clinic till i got married 3 years ago (i moved and another clinic is closer by hours)
All growing up I was never close to the dallas clinic...the closest i lived to it was 4 hours...so I couldnt just go up there everytime i needed. So I have always had the cf clinic and then a pedi or general doctor that new some about cf. I saw them any time I got sick....they would ask what we thought was going on and needed to be done, make their own thoughts and then call my CF doctor to see if what his original plan for my treatment was ok, and what else needed to happen. I was lucky enough to have my pedi doc know what to do and was right most of the time. The cf docs would just say yeah thats good or say try this med stuff like that. Then every 3-6 months depends on how well i was doing I went and say the CF clinic in Dallas. They keep track of my over all health and CF...did all the tests such as lung functions, labs from the time I was diagnose till now and so on. Its good to see them because they know how to get everything together CF wise and keep track of pateints health throug out the years. They also are required to go to meetings and classes for not just general doctor upkeep but for CF education simce everything changes all the time. They go to seminars on CF drug studies, anything cf related so they can always have the best treatment available and so they know all the new stuff and possiblities that are coming to help treat their patients better....

Anyway I like the Dallas clinic. Peds anyway they treat you well.

 

[anonymous]

Hi Tapestry,

From what I've read the survival rate is much longer for CF people who go to CF clinics (see the CFF.Org wegsite). I drive 1 hour to take my daughter to a CF clinic in Baltimore and it's definately worth it. They only have appointments on Wednesdays. Of course, when I called right after her diagnosis they gave me an appointment for the very next day. Maybe you can call an insist on a sooner appointment. Tell them why you are very concerned and want your daughter seen asap.

 

[anonymous]

I'd stick with the cf clinic care rather than a pulmonologist. The cf clinic doc will co-ordinate any other care that is necessary, such as a gastro doc or an ENT doc .etc. The doctors from each discipline actually talk to each other and discuss the best treatment course. We've tried individual doctors too, but prefer the team approach that a recognized CF clinic uses.

 

[anonymous]

Just a quick thought, you could always use the pulmonogist as a modified version of a "family doctor" who you can go see when the clinic can't get you in right away.

Julie (wife to Mark 24 w/CF)

 

[aliciagwen]

Hello!  I will soon be relocating to the Dallas area.
 Can you tell me why you chose FW over Dallas, and how long
ago it was that you were there?

 

[aliciagwen]

Hello!  I will soon be relocating to the Dallas area.
 Can you tell me why you chose FW over Dallas, and how long
ago it was that you were there?

 

[aliciagwen]

Hello!  I will soon be relocating to the Dallas area.
 Can you tell me why you chose FW over Dallas, and how long
ago it was that you were there?

 

[anonymous]

I vote for the clinic! There is tremendous benefit to be gained from the team approach, especially since CF affects every part of the body and not just the lungs, which is what the pulmonologist would know best.

The commute is something to consider, that's for certain. I'm a Californian so commuting is second nature to me. Looking back I see how the time in the car with my mom before and after the appointments was a good way for us to keep communication going about how I felt about coping with CF. The distance traveled to CF specialists can be something that you itemize on your tax return, so you may want to think about that as well.

I prefer the CF Clinic approach, but I have always made sure to stay in the good graces of my primary care doc as well should anything come up before I could get to the clinic. I guess it all depends on your healthcare situation and what you have access to.

The other benefit of being in the team clinic is that they are privvy to the latest information about CF treatments, etc, that the other doc might not have at his or her fingertips.

My mom and dad would say that the added hassle and distance to make sure I got to see a CF specialist was worth its weight in gold. We built a tremendous relationship with the case manager at the peds clinic I was in until I was 23. My CF doctors even attended my wedding!

Now I go to adult clinic and have had my socks knocked off with how knowledgeable the team is. The peds clinic I was at truly was at the top of their game, but even they had their limitations, which is why it was time to venture forth into the land of adult care!

I hope you arrive at a decision that works best for your family. I have a feeling you'll need to come up with a solution that combines that best of both types of doctors' availability and expertise.

Regards,
-lightNlife

 

[anonymous]

I vote for the clinic! There is tremendous benefit to be gained from the team approach, especially since CF affects every part of the body and not just the lungs, which is what the pulmonologist would know best.

The commute is something to consider, that's for certain. I'm a Californian so commuting is second nature to me. Looking back I see how the time in the car with my mom before and after the appointments was a good way for us to keep communication going about how I felt about coping with CF. The distance traveled to CF specialists can be something that you itemize on your tax return, so you may want to think about that as well.

I prefer the CF Clinic approach, but I have always made sure to stay in the good graces of my primary care doc as well should anything come up before I could get to the clinic. I guess it all depends on your healthcare situation and what you have access to.

The other benefit of being in the team clinic is that they are privvy to the latest information about CF treatments, etc, that the other doc might not have at his or her fingertips.

My mom and dad would say that the added hassle and distance to make sure I got to see a CF specialist was worth its weight in gold. We built a tremendous relationship with the case manager at the peds clinic I was in until I was 23. My CF doctors even attended my wedding!

Now I go to adult clinic and have had my socks knocked off with how knowledgeable the team is. The peds clinic I was at truly was at the top of their game, but even they had their limitations, which is why it was time to venture forth into the land of adult care!

I hope you arrive at a decision that works best for your family. I have a feeling you'll need to come up with a solution that combines that best of both types of doctors' availability and expertise.

Regards,
-lightNlife

 

[anonymous]

I vote for the clinic! There is tremendous benefit to be gained from the team approach, especially since CF affects every part of the body and not just the lungs, which is what the pulmonologist would know best.

The commute is something to consider, that's for certain. I'm a Californian so commuting is second nature to me. Looking back I see how the time in the car with my mom before and after the appointments was a good way for us to keep communication going about how I felt about coping with CF. The distance traveled to CF specialists can be something that you itemize on your tax return, so you may want to think about that as well.

I prefer the CF Clinic approach, but I have always made sure to stay in the good graces of my primary care doc as well should anything come up before I could get to the clinic. I guess it all depends on your healthcare situation and what you have access to.

The other benefit of being in the team clinic is that they are privvy to the latest information about CF treatments, etc, that the other doc might not have at his or her fingertips.

My mom and dad would say that the added hassle and distance to make sure I got to see a CF specialist was worth its weight in gold. We built a tremendous relationship with the case manager at the peds clinic I was in until I was 23. My CF doctors even attended my wedding!

Now I go to adult clinic and have had my socks knocked off with how knowledgeable the team is. The peds clinic I was at truly was at the top of their game, but even they had their limitations, which is why it was time to venture forth into the land of adult care!

I hope you arrive at a decision that works best for your family. I have a feeling you'll need to come up with a solution that combines that best of both types of doctors' availability and expertise.

Regards,
-lightNlife