CF Center Issues (need opinions, please)

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ReneeP

New member
Good Morning Everyone...

I just want to see if some of you can share your thoughts with me on your opinion of your CF Center. You don't have to say where you are, just if you get the care you think you should. I am wondering if maybe my expectations are just too high or if I am being unreasonable.

We have moved a couple of times over the last few years so we've spent a considerable amount of time at 3 different CF Centers. With the first two we were very happy. If we had a problem, we could call and ALWAYS got a call back. If we needed to be seen on a non-clinic day, it was no problem. Anytime another dr would prescribe a medication to one of the girls, the CF Center wanted to know about it. They always wanted to be the center of the girls care and to always know what is going on.

Now, it is completely different. Since moving about 15 months ago, things have totally changed. I can call the CF Center here and it's like playing the lottery as to whether I'll get a callback or not. Most of the time I don't. The last time we were at the clinic the dr messed up the girl's prescriptions for enzymes. He put the wrong amount. I called 3 times and the pharmacist called 2 times...we still did not get a call back. It took more than 2 weeks to finally get the nurse to call and correct the prescription. (I had enough for them to take, it's just the point that they don't seem to care.)

My younger daughter has had some major sinus problems since we last moved and has had several surgeries. The last surgery they did was in early March. Just about 2 1/2 weeks ago I got the results from a culture they did on a sample from her sinuses. It showed 3 things she was growing. I called the CF Center right away and left a VM telling them the 3 things and asked if they wanted her on antibiotics. I never got a callback. Finally this past Friday I was telling my husband this and he called the CF Center and demanded they page the dr. She finally did call him back and said she would look into it. Later in the day the nurse called me and apologized for not returning my call in the first place. THen she said she had talked to the dr and the dr said that it was up to the ENT to decide if he wants her on antibiotics or not. Basically she told me that was not their job. Since they did not do the culture, they should not make that decision. Maybe they are right and I'm just spoiled by the previous center's involvement??? That's what I want to know. Am I being unreasonable for the CF Center to be involved in my girl's care outside of the regular, quarterly visits?

Please, let me say that I am not harrassing the CF dr by any means... I MIGHT call once in between our 3 month visits. It's not like I am calling them weekly or anything.... it's just that when I do call, it's because I need something and I think they should have the respect of calling me back. Also, keep in mind that my CF Clinic only has 50 CF patients.... It's a small center. You would think that would mean they have more time to respond....

I am leaving tomorrow to drive up to clinic as we have an appt Tuesday morning. They know I am frustrated because of my husband's call on Friday. I am planning to talk to them but just want to make sure I am not expecting to much before I go make a fool out of myself. I am already driving 4 hours to this center and the next closet one is 6 hours away. (which I would happily drive it the care would be better)

Thanks for any opinions...
 
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JazzysMom

New member
My clinic is at St. Vincents Hospital in Manhatten, NY & I am PROUD of them. In addition to my CF they want to know & have info on any other medical problems such as my epilepsy etc. I go thru them for everything & they refer me to a specialist of needed etc. I consider them my primary since most of my health issues are CF related. I completely understand your worry & frustration from the care you get now compared to what was being received. I personally feel that everything should be based around the CF. What I mean is screen everything (within reason I realize I am not talking a toothache that is obviously from a decayed tooth) thru them. If tests came back from the ENT showing certain bugs & the ENT wants input from the CF doctor then that is what they should get. Do you know what the culture showed? Is it normal CF bugs? If the ENT is not familiar with it then its even more important for the CF doctor to give feed back. If the ENT is just covering their a$$ that is fine to because when its all said & done if something with the sinuses is wrong it can affect the lungs. I would come right out & tell them (IMHO of course) that you expect reasonably prompt return calls & answers. You arent willing to be sitting back waiting for a bomb to hit. If I remember correctly you dont have a lot of choices in care. If that is the case you must addresss the problem & stand firm. Make it clear what your expectations are & verify without doubt if they are willing & able to meet them! Speaking from experience that CF can get out of hand quickly when the "small" things are overlooked. When you add other doctors into the mix then it becomes more difficult. Good Luck & Like I said STAND YOUR GROUND! Let us know what happens!
 
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NoExcuses

New member
Renee - I'll be upfront with you. That clinic sounds AWFUL!

I would be extremely unhappy with that type of follow-up if I was at that clinic.

I have been to two CF clinics - CHLA as a kid and USC as an adult. I dont' really remember the CHLA experience because my mom took care of everything.

But USC has been tremendous - I get a call back from my doc in 5 to 10 minutes if I have him paged..... no exaggeration.

If I were you, I would start getting on that doctor. I would even threaten to contact the CF Foundation and possibly threaten their CFF accredation. Because really, being non-responsive to an illness like CF can have horrible consequences.
 
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ReneeP

New member
Thanks for your responses. It makes me feel better to at least know that I am not overreacting.

I was looking at the results of the culture I had mentioned earlier and this is what they found:

Staphylococcus aureus
Streptococccus Pneumoniae
Haemophilus Influenzae

I know she has cultured Staph and Haemophilus in the past. When we were in MPLS they always treated her anytime she cultured anything. Here, they don't feel that way and they haven't treated her either of them. It was mostly the Streptococcus Pneumoniae that I was concerned about. Being that she doesn't normally culture that, I thought I should at least mention it and see if they wanted to treat it. I can't say it's something I know a whole lot about, but it doesn't sound like something I just wanted to ignore. However, they have made me feel like I was wrong to call them.

The ENT we see is very uncomfortable prescribing antibiotics for Kacie. He doesn't treat many CF patients and likes to run everything by the CF Center, but they tend to blow it off and basically say it's his responsibility to treat her. They seem to only want to be involved when they are the ones who ordered the culture.

One of the things that really bothered me was when the nurse finally called me back after 2 1/2 weeks and apologized. She made the excuse that if it were only CF patients she had to deal with it would be easier for her to respond more quickly. She said she is the nurse for several clinics and that makes it harder. I told her I understand that, however, it is my job to make sure MY children are taken care of. I also told her that it is not fair to MY children that their care is comprimised because of her busy schedule. I already feel that I have made a bad name for myself there but I can't be concerned about that now.
 
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anonymous

New member
Sounds like you go to my kid's cf center in Houston. That is how it works for us...extremely frustrating.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
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debs2girls

New member
ReneeP, that is the exact same things my dd always cultures and I dont feel the clinic is aggressive enough in her treatment. You must go to the same one we do....lol.......I have just about had it with ours.
Last month at our visit the doc was asking about Chey's health since the previous visit...I informed him I was not happy with his staff because I felt she should have at least been seen....he jumped down my throat cause I didnt bring her in....HELLOOOOO....I said what am I supposed to do when I call and they (his staff) wont make an appointment? He said we cant prolong her life if I dont make sure she is seen when she needs it....made me so mad I almost cussed.
Well, it has happened again...he put her on an antibiotic that day in the clinic....two weeks later, she is running a fairly high fever, bad congestion, wet cough, nasty nose....so I call them...they say well she is on an antibiotic already, yes but I dont think it is the right one. Well just get the refill and continue....ok, now she really sick....I call them back, they put her on prelone...which she hates, I am still having to do nebs every four hours or she cant stop coughing....by now she is finished with two rounds of antibiotic, nebs around the clock and a weeks worth of steroids.....THEN they change her antibiotic...that was three days ago, she is doing some better finally...but is this doctor going to gripe at me again for not getting her in? Short of sitting in his office for an appointment, I tried to get her in.
I am ready to go back to our other doctor...well almost...she wasnt treating Chey for cf...she was only treating asthma.
Sorry this is so long, but I had to vent.
 
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ReneeP

New member
It's funny, Sharon, that you would say that it sounds like we go to your children's clinic in Houston... Just this morning when I was looking online for another clinic within driving distance of our house, Houston is the one I was looking at...lol... Online it looks impressive... It's much farther for me to drive but I am nearly at my wit's end. Unfortunately it doesn't sound like it's much better than where we are now after reading some of your posts. I am going to wait and see how it goes on Tuesday and then figure out what to do from there.

And Debbie, I can all too well relate to what you're saying. It's really hard coming from where I was to where I am now. I feel guilty for moving. I really can't say that the girl's health has gotten worse (other than Kacie's sinus problems) but that's only because they work hard at home doing treatments. It really has nothing to do with the CF Center. My fear is, however, that as time goes on and the disease progresses, it will have more to do with the CF Center and I want to be prepared. I wonder about the Dallas Clinic...anyone familiar with that clinic?

Thanks to all of you for your responses. I'll let you know how it goes at our visit.
 
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spicyone18

New member
I go to the Dallas Clinic, the adult clinic now. But I went there for Peds too. Me and my mom both like the docs there. The Dallas clinic is the only one I have experienced with.
 
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anonymous

New member
Renee,
I could have written your post about the Houston clinic. I changed cf doctors two years ago to the head of the clinic trying to get a more aggressive apporoach to treating my kids as well as someone who would take a greater interest in my kids between visits. Unfortunatly, I am now running into the same problems I was a few years ago. My kids are generally very healthy. I maybe call the cf nurse twice a year with concerns about my children. My calls never get returned in a timely manner. If I do get a call, I am told even though it is a Thursday morning, I am told "no the doctor cannot see your child today or tomorrow, go to the pediartician." Twice in previous years I think my kids actually need to be "seen" by the cf clinic. Both times I have had to leave a message saying, "nobody has called me back since yesterday and I am concerned about my child. I will be showing up at the clinic at 10am, and I expect a pulmonologist to be ready for us." We were seen then. But it is sad that is what it takes. I have to call and ask them to call about their cultures. I actually really like the nurse and cf doctor as people but am having a hard time with getting there attention between visits.

I took my kids to the Minneapolis clinic last year for a second opinion. That doctor gave us his e-mail address and because he wants his patients to stay in contact between visits. Now that is how every cf clinic should be.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
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cfmomma

New member
My son also goes the clinic at Children's in Dallas. We love it, but it is the only one we have taken him to so I can't compare. I have always got a call back the same day, and they certainly have never deferred advice to some other clinic in the hospital. Nothing is more insulting and belittling to a parent, than to just be blown off when there is a legitimate concern. Go raise some Hell!!!
 
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anonymous

New member
I have to say I have been very fortunate in my girls care. The nurses call me on the weekends, if there are problems. They are extremely devoted. Good luck with getting the care that your children deserve. Deb<img src="i/expressions/heart.gif" border="0">
 
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anonymous

New member
Renee
What clinic do you go to? The reason I ask I take it you must live in Texas, I'm frustrated with our clinic in a neighboring state so I have been checking into ones in Texas. The one you describe doesn't sound like an improvement to meso I want to avoid it.

Terri
Mom to 3, 1w/o cf, 2 w/ cf
 
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ReneeP

New member
Terri,

We go to the San Antonio Clinic. I know there are people who really like the clinic and I don't want to sound like I'm trashing it. As far as the dr goes, I do feel that she knows what she is doing and I would trust her as far as caring for the girls. My problem is really with the other staff. The not returning phone calls and stuff. I don't even know if the dr ever knows that I call. It's just very different from what I am used to.

By the way, we did go to clinic on Tuesday. I didn't even get to talk to them about the things that were bothering me because too much other stuff was going on during the visit. I am going to do another post on that because I have other questions I need to ask.

Thanks again for all your replies. I am hopeful that things will improve and if they don't I will have to travel a little further for our visits. Good luck to all of you.
 
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Emily65Roses

New member
Hey. Don't mind my boneheadedness. I currently don't have the patience to read through all the resposnes. But in short, I go to Yale New Haven (in CT) Hospital. They just added a CF adult center, and I love it there. Ask any questions you may have, and I'll add specifics. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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farmfamily

New member
Renee, Thanks for your response. Iknow what you mean about so many other issues that sometimes I don't have time to address things I plan to address in clinic. Especially with siblings. How do other clinics handle siblings?
My son is having a lot of sinus problems I sometimes feel it gets lost between the cracks,

Terri
 
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LouLou

New member
Renee, I lived in Austin for 4 years. They have a great team there. I miss them so much. Only 1 more hour from San Antonio.
 
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