Community Discussion Forum Adults and PKU Best Clinics Reply To: Best Clinics

Avatar of Kristi

 I live in Tucson, AZ.  We had a great doctor here, and he traveled to clinics throughout the state, except for Phoenix where they have their own doctor.  Dr. Heidenreich left AZ and took another job in another state back in '08 and since, we haven't had clinic down here.  Now, we have to travel to the only genetics clinic, which is in Phoenix.  I visit Dr. Aleck in Phoenix (2 hours from Tucson) next week for my second visit and have met him at a few PKU Christmas parties that I've gone to.  He seems very nice and knowledgeable also.  My dietitian is the same as before, and she is great–I can email her or call her.  I don't have questions very often but when I do Dr. Aleck and Melanie have been able to answer them.  There is a new dietitian that was just starting at the clinic when I visited last year and she and I were having some communication issues re. the fact that I don't keep super  close track of my phe intake day-to-day but rather keep a mental running idea of how many high vs. not so high vs. low things I eat per day.  I understand what she was expecting of me, and I understand that ideally, that I'd count very closely every bite that goes into my mouth.  But my dietitian and I have realized that with levels of 3-6 usually with my system, it works-and I realize that with maternal PKU someday I will have to be more exact.  I try to tell myself that she may be new to the PKU world and with working with me, so maybe over time we will see eye-to-eye more.  I was able to do a 3-day diet record for her when she asked and she adjusted my formula intake, so it wasn't a bad thing all around.

As far as coverage in AZ, not so wonderful.  Back 10 years ago, we lobbied and got a bill passed for insurance companies to have to cover 50% of formula and medical food for metabolic disorders, with a $5K cap.  I've had some issues with coverage through my dad's company, as they fit into one of the loopholes.  With my insurance through my old job, I was fighting with the insurance company to get the 50% of formula covered.  I did get it approved at one point, but they didn't always follow through and I got rejected the second time around, but I was leaving the job anyway so didn't fight it much.  My husband is military so now we have Tricare and the battle was minimal and the coverage is good…just a co-pay of $9 for phlexy-10 per month and a small co-pay for dr visits (which is good, since I use a full tank of gas to get to/from my appointments now!)

What field are you going to be looking for a job in?  Do you like certain climates/landscapes?  I grew up in Tucson and love southern arizona–we don't have natural disasters like a lot of other places are threatened with (hurricaines, blizzards, earthquakes, tornadoes).  I can deal with the heat usually, as there are plenty of swimming pools to cool off in and air-conditioned buildings.  If I want snow in the winter, we take a simple day trip up the nearby mountain and within an hour, I'm throwing snowballs around.  A lot of people have a hard time adjusting to not having green, but the beautiful mountains all around and good weather for doing things outdoors is appealing.

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