Bad Accredited Clinic Experiences

[Grendel]

To continue, recently I went to Phoenix Children's and in a matter of 6 weeks I may have lost permanently 15% more of my lung function from their failure to act and aggressively treat an exacerbation. I can't say too much more about it as malpractice lawyers say I should not discuss in detail the dynamics of the situation.

I characterize these expereinces as my own and relate them to you only to caution you, and to advise you that regardless of the CF Center, you must be your own advocate and hold a healthy distrust of the physicians and their capasites. We are led to think that they are equally capable and equally motivated, but they are not.

Best,
Grendel

 

[ReneeP]

I have taken my daughters to 4 different CF Centers over the years and have been happy at two of them. The two we really liked were Knoxville, TN and Minneapolis, MN. The two we weren't so happy with were Lexington, KY and San Antonio, TX (where we currently are). I recently posted about some of the problems we are having in San Antonio so rather than try to re-write it, I'm just going to copy and paste...

"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.... "

***

Things have not improved since that post and we are seriously considering going back to Minnesota. I absolutely hate the weather there but the girls did much better and that's what is important.

By the way, I agree that it's good for people to know things like this and I'm glad you started this post. It may be a touchy subject because it may sound like we are trashing clinics but I really wish someone had told me a few things about our clinic before we moved 1500 miles away because I would have seriously reconsidered. Good or bad, it's things that we have a right to know. It's not like we're treating ear infections here...

Take care!

 

[ladybug]

Renee,

I'm so sorry you had that experience! I LOVED my clinic in San Antonio. Which one do you go to? I think there are 3-4 accredited (or sattelite centers) there. I also know that instead of moving back to Minnesota... brrr... lol.... I"m from ND... you could try out the Houston clinic or a clinic closer to San Antonio. Just an idea. Perhaps I was spoiled in San Antonio, but I compare all my clinics to them now, and find NO ONE comes close.

I agree, however, that nurses/doctors getting back to you is VERY important! I had that experience at one of my clinics where the nurse and I played phone tag for a few calls and VMs and finally when she did get ahold of me was VERY snotty about the fact that I had been hard to get ahold of! Then, she proceeded to give me exact dates and times I had called and the exact dates and times she had called me back over the past couple weeks. She only left a message (or showed up on my phone) ONE of those times, so I have no idea who she called the other times, but the attitudes of the health care professionals, I think, is just as important as the treatment they render. ** It also should be mentioned that I called a few WEEKS after a sputum culture to get my results... The secretary took a message (11:00 am) and said the nurse would get back to me after lunch. Well, I waited until 3 pm and called again. I got through to the nurse and she proceeded to get snotty and tell me that she calls people about their cultures after 4 pm. So, that is why she hadn't called me back. It wasn't 4 yet.*** ARE YOU KIDDING ME?!?! What is with some of these people?!?

Anyway, if you don't want to post where you go in SA, feel free to PM me. We can chat about a couple of the clinics I've been to there, if you'd like.

 

[IG]

I'm with Sonia on this.
And I am wondering, as well, which clinic in San Antonio you go to.
There is one that is headed (last I knew) by a woman who is the most horrible person I've ever experienced.
I would not suggest her for CF care for children if my life depended on it.
Then again there is another CF clinic (that is just CF) which I find wonderful, headed by about 4 pediatric pulmonary docs specializing in CF.

That was my last clinic, when I was there they were undergoing major staff changes (and starting to move over 18 to adults) so things were definitely chaotic, but the docs are nice and knowledgable and definitely trying to change things over as smoothly as possible.

 

[ClassicMovieLover]

Questions to Grendel or anyone else with a story to share about
Phoenix DR's and Hospitals<br>
<br>
I will be moving to Phoenix in 6 mo to a year with my parents for
my health and I wanted to know where you now go to for care. I
currently am seeing all private practice/non-CF center doctors in
Memphis,TN. I have had nothing but a wonderful experience
since leaving the clinic here and going to the " private
sector" as I like to call it.<br>
I  wanted to know if anyone could recommend 1) A good hospital
to go to in the phoenix vicinity  2) A pulmonary group
that  is thorough and treats adult CF. We plan on visting in a
few months to spend a week " trying out " the
dr's and hospitals there and would greatly appreciate any
suggestions on where to start.  <br>
<br>
Thanks! 

 

[Scarlett81]

Well I haven't had many bad experiences.

But the one very bad one I had was with a doctor at a center-who I will not name-and I didn't like his attitude towards patients. Very casual. Talked on his cell phone during office visits. I'd be in the middle of explaining a very serious problem I was having-serious stuff-and he'd answer his cell and discuss where they were going out for dinner that evening. NOT even discuss doctor stuff.

Then, one day he asked me if I wanted kids, and my hubby and I were not at that point yet. But I said, yeah some day-and he goes, well b/c your lung function is low right now, but you could live through it and at least give your husband a child even if you wouldn't make it. So that was pretty much the last straw.

Not to mention that my lung function declined at least 25% with them.

But now I' have an awesome proactive team, fighting along with me. And I have nothing bad to say about them.

 

[Grendel]

Marlene,

That has been a point of some concern. However, I may be in a better position to answer this in a week or two. At a friend's request, I am going to check out the local Mayo Clinic in Scottsdale. This sounds promising, though not without transaction costs. So far, I have realized that the Mayo Clinic operates similar to a HMO in that they require you to have an Internal Physician before you can even see a specialist despite my obvious qualifications. Further more, my appointment is at 2 PM, and the appointment agent said I need to be there by 1 PM to address registration. As many of us have, I have been to too many doctors and health care practitioners and never have I been told registration will take over 15 or 30 minutes. And to add more fun, the Mayo is extremely picky which insurance company you have. If they do not support the plan, they will request a $500-$3000 deposit before you see a physician.

I am hoping that once I receive a green light to see a pulmonologist the wait won't be long. If the wait is over two weeks I may scrap the idea. CFers need more emergent care than two weeks, especially when they are older and have low FEV1 scores. But we will see how it goes.

If this does not workout, my wife and I may move to Albuquerque. I am familiar with the CF center there and know the team is strong. The doctor is new there (3 years) but the hospital is reasonably good.

Another thing about the Phoenix Children's Hospital is that they cater to the non-English speaking population, meaning when you go to the clinic, you can easily pretend you are in Mexico City. So if you are pro-illegal you may be quite happy there. But if you are like me and can't stand the idea of requesting people to speak English in my own country, you may have an additional reason not to step foot in Phoenix Children's.

Wish me luck at the Mayo.
Good luck to you too.

 

[chantelfox]

To those concerned about the Phoenix Children's Hospital and the
Mayo Clinic...I left the Phx Children's Hosp. when I was 16.
 I had been going since I was 6 years old. It seemed that when
I turned 16 they just didn't know what to do with me anymore. They
didn't have much experience with adult CF at the time and just made
me feel very discouraged every time I went. I left them and began
going to the Mayo clinic in Scottsdale. I went there for about 3
years. They knew very little about CF. Fortunately, I was able to
keep my lungs pretty healthy during that time. BUT, I was
consistently getting what turned out to be bowel obstructions that
were passing on their own. They were extremely painful and the docs
had no clue why I was getting these pains in my stomach. I went
through COUNTLESS tests (barium enemas, x-rays, etc.) but they
never could find out why I was getting these pains. Until I ended
up with a good one that landed me in the hospital. Once my Mayo doc
realized that I was geting obstructions, he said I should not eat
ANY fiber, including fruits and vegetables. (WHAT AN
IDIOT!!..hind-sight is 20/20) . So after a YEAR of eating hardly
any fruits and veggies, I got a lung infection and began coughing
up mouthfuls of pure blood. When I was rushed to the hospital, they
ran tests and found I had nearly NO vitamin K. Hence, the bleeding
profusely. My body was not able to clot well at all.  Turns
out that my Mayo doc forgot about that when he said no fruits or
veggies and I had never been on ADEKs before (nor had I ever heard
of them).  In the end, I left Mayo and now go to the Tucson CF
center. They are pretty good. At least I don't leave depressed and
they know what they're talking about!!  Hope this helps!!

 

[coltsfan715]

<div class="FTQUOTE"><begin quote>It is the Jacksonville, Fl. CF clinic by the way!

~zoe4life </end quote></div>

Who do you see there if you don't mind me asking. Do you live in Jacksonville, FL or some other area? I am in Jacksonville and went to that center from the age of about 10 to 21. I went to another doc when I was younger - when he passed away I started going to clinic at Nemours. I love the people at that office they are so wonderful. I saw Dr. Hudak mainly when I left a few years ago, I still stop in to say hi on occasion. Kathryn Kosman/Kinyon (I can't remember what she goes by) she is great too. Now I go to a pulmonologist across the interstate at Baptist, but am trying to get in at the new adult CF clinic/docs office at St. Vincents.

I never really had a problem with the cross contamination, but I was also a bit older when I started going there so I wasn't playing with all of the toys. I am sure it is hard, but since they see kids with problems/illnesses other than CF they need somewhere for them to entertain themselves. If she really wants to play you can always try bringing some of your own toys maybe? I used to always bring a book or homework once I got into high school - that kept me plenty occupied.

Lindsey

 

[Grendel]

Well I went to the Mayo Clinic in Scottsdale and Chantel seems to have it right. I think I was the foremost expert on CF in the whole hospital. I don't like that feeling one bit. Besides, they don't have any pulmonary doctors, so they set appointments for me with the Thoracic Physicians. Also, it will be a month out before I can see them. It is hard to be impressed with the fancy facilities when the physicians regard you somewhat as a Martian. I think I will cancel the appointment and just go to Los Angeles clinic or move back to New Mexico, they have a decent clinic.

As for Tucson, I called there twice and on both occasions was told that they do not care for adult CF patients. Chantel must have been followed by them for a while to continue to see her at 24 years of age.

I strongly recommend you stay far far away from the Children's Hospital in Phoenix. They are dangerous and should not be practicing medicine.

Best,
Grendel

 

[falloutboygurl16]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

Well, guess I'll take the first stab....



My experience (first and last) with the clinic in Las Vegas was less-than-appealing. I had never met them before and came in after having been referred by my San Antonio clinic after we moved from there to Vegas area. Well, the clinic treated me like they had no idea why I was there if I wasn't sick! Well, for starters, "I have CF! I need to get in with a clinic so when I <i>AM</i> sick, I have somewhere to go who knows me and has my medical records, etc.".



Well, aside from acting like I was wasting their time (note: The dietician and social worker were very friendly), they were crabby and not helpful. The doctor, though seemingly concerned, listened to a couple places on my lungs and that was it. I felt like I wasted a trip coming to see them. Aside from the deitician and social worker, they were terribly rude. They rarely smiled, and one of them even talked badly about my previous CF nurse in San Antonio saying she "didn't know how to use a fax" and just "seemed irrational". Funny, I always LOVED my CF nurse in San Antonio. Found it unprofessional this person would complain to the patient about her and what a pain it was getting charts from her.



Then, just this last November (yes, it had been about 8 months of not contacting the LV center), I called them to ask if I could come in for my flu shot. I mentioned they had me on file and that I hadn't been there cause I was currently in a study at the University of Utah for my CFRD, and they followed me for care there every 3 months. I told Vegas clinic that Salt Lake clinic was 400 miles one way, and I couldn't go there just to get a flu shot. They told me the nurse said it had been too long since I'd been to their clinic, and I'd either have to come in for an entire clinic day (which, I doubt insurance would pay for since I was already having such days every 3 months in Utah) OR, I should "just go back to your center in Salt Lake". I explained to them it was 400 miles away (which they knew), and couldn't I just get the shot from them... I mean, they <i>knew</i> I had CF and had been to their center, so shouldn't they be more concerned for their patient and want to help out so I didn't get the flu?!? Obviously not. So, I just told them thanks for nothing and hung up vowing never to contact them again.



I found it unbelievable that:

A.) They didn't understand my plight and the fact I can't go to two CF clinics for the same tests/visits, etc. just in order to give me a flu shot!



B.) I hadn't been in town long, and didn't know where they were having flu shot clinics, so thought the very least they could to was point me somewhere in town like a Walgreens or something where I could get a shot.



C.) Isn't patient's well-being most important? I even told them they could call Salt Lake to verify I was in fact visiting them for a CFF study and all was up to date. If they needed records, Salt Lake could give it to them. Seems this was motivated by money (Vegas wanted to get more from me than a flu shot could provide) and, more likely, power (why would they possibly help a CFer from another center?!? isn't that one of the 7 deadly sins?!?)



So, you can see my disgust with the Vegas clinic. They were rude. They didn't seem to care about a fellow CFer and keeping me healthy (even though I had been to their center) unless I was willing to pay and take my time to re-do tests I had had done a month ago.



The whole thing left a terrible taste in my mouth. I will not go back there. Matter of fact, I'm trying to get a referral to a regular pulmonologist in town for emergencies. I don't trust this care center to have my best interests in mind, and am soooo glad I found this out early on before I got really sick and left my care in their hands.



So, that's my story.</end quote></div>









Hey i used to live in Vegas and the care there WAS good yes it WAS but the doctor i had died after i left Vegas sorry you couldnt have him..he was a great doctor!

 

[chantelfox]

OK, so I just talked to my mom and I don't remember this, but she
says that she took me to the Tucson CF center when I was 16
like once a year or so. I told her about them not accepting adult
CF patients and she said the reason is because the Phoenix
Children's Hosp. CF center is actually registered by the Cystic
Fibrosis Foundation as the "Primary Adult CF Care
location" eventhough the doctors are negligent and fail to
care properly for adults. They SHOULD NOT be
the "Primary Adult CF Care location" in my opinion.
This is why insurance will not cover my CF appointments in Tucson.
I am an adult and they want me to go to the Phoenix one. But, I
feel that I have given Phoenix's CF center enough of my time.
Actually, there was one time that I was sick that my mom took
me to get check out by the Phoenix center and after we waited for
nearly 2 hours the doc told me I was fine and sent me home without
antibiotics. I ended up in the ER the next day.<br>
<br>
<br>
Anyways, yeah best advice...stay away from the CF center at the
Phoenix Children's hospital.<br>
<br>
I think the CFF needs to know about the improper care at the
Phoenix Children's Hosptial.