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Making the journey to NJH

Just thought I’d share my own journey/experience in trying to get to NJH for evaluation. Today marks the first steps: 

– Primary doctor has a referral for me to go to national jewish but they can’t get the fax through despite multiple attempts. If I get the right number, I’ll share it for you guys. 

– called my insurance, NJH is a network provider (hooooray!)

– called the general NJH number. They took my info and said a nurse would call me back.

– spoke with an asthma clinic RN, they said the first step is registration, then a 45 minute nurse intake call to get your history and decide on what tests to order, then once insurance approves they can schedule your visit. 

– registration done! Nurse intake call scheduled for next Friday at 8am. Ooofta! But at least the ball is rolling.

 

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Comments 33

  • LK

    Em,  Congratulations on getting so much accomplished!  That is wonderful news that NJH is in-network!!  Sounds like you are well on your way to getting this going.  Good for you!!    Cheering for you!

  • K8sMom2002

    Woohoo! I'm so glad that you have made such headway! 

    What all will you need to have handy for the intake call? 

  • Deborah Bartlett

    Like my Grandma Frances always said…The squeaky wheel gets the oil! Em…did you use olive oil? It works faster!

    Congrats Em!!!! Sending you hugs! 😁💗

  • Emelina

    Thanks Lisa, Cynthia and Debbie! I think the intake call is just an interview in terms of history, symptoms and a review of workup already done so stuff doesn’t have to be repeated. I think mainly they are figuring out which specialists you need to see; I think I’m going to ask to see ENT and GI for sure. Lol, I was out of olive oil so went straight for motor oil. Gotta grease those wheels. 

    I’m so thankful and grateful! I about jumped up and screamed hooray when I was told all of the providers are in network. Still struggling today and trying to cough up my toes, and my hands are shaking from the albuterol. Looking forward to some answers and some relief!

  • Deborah Bartlett

    Seek and ye shall find.

    We will be anxiously awaiting a full report when all is said and done. Seriously, we couldn't be happier, or more proud of you, Em! 😂

     

  • Emelina

    Thanks Melissa, I’m so excited. 

    Thanks Debbie. I think this is a good turning point in my recovery. Rather than sit and stew and be mad and relive the last month, it’s time to move forward and get the answers I need to move forward with life. My future U Colorado pulmonologist serves on the ATS team that writes guidelines for the treatment of severe and difficult to control asthma. It was interesting to read about all of the contributing factors which included mimics, coexisting disease (gerd, polyps), and other things like unrecognized triggers (silent aspiration). Even the differential diagnosis is mind blowing: atopic cough, non asthmatic eosinophilic bronchitis, etc. Also I have enough weird features (act like a cough variant rather than normal asthma, rapid progression and inability to wean steroids), that I finally asked myself what do I need to have piece of mind – and I realized I need to explore and check off these boxes and use the tools offered by NJH to ensure that both the diagnosis and treatment plan is correct. The allergist and my angel pulmo have both mentioned biologics, so I also I felt I needed to confirm the diagnosis before committing to a very expensive therapy with the rare risk of anaphylaxis and increased risk of malignancy. 

    It helps too that all of my friends said gooooo too. It will be harder to stay for 7-10 days in Denver, rather than just 1 day if I went to u Colorado but will be well worth it. 

    Plus, I looked at my 3 boys and said I’m doing this for them. They need their mom back. 🤞 the countdown to NJH is on!

     

     

     

     

     

  • Melissa G
    Emelina posted:

    Plus, I looked at my 3 boys and said I’m doing this for them. They need their mom back. 🤞 the countdown to NJH is on!

  • Emelina

    Thanks Melissa and Debbie. I started to look through the NJH website area for patients and started to think about travel and lodging. 🤞 that the wait isn’t long between intake and scheduling. In the mean time, I’ve been working on educating myself prior to the trip. The aafa severe asthma course is extraordinary and so well done! The handouts are super helpful and I especially liked the overview of the medications, trigger avoidance, inhaler/equipment tips and the biologics!

  • LK

    That Severe Asthma Care for Adults is such a great course!  Just finished it.  Reminded me of several things and taught me a few good ones, too.  That's a good idea to learn all you can before you go there.  

  • Deborah Bartlett
    LK posted:

    That Severe Asthma Care for Adults is such a great course!  Just finished it.  Reminded me of several things and taught me a few good ones, too.  That's a good idea to learn all you can before you go there.  

    I agree Lisa! It is a great idea! 

  • Emelina

    Oooof, NJH has a weird system. They don’t give you the number to the clinic to talk to a warm body. I wanted to talk to someone in the clinic to see if it would be ok to wait to do pft’s until at NJH (currently have a local appointment on Thursday with a major blizzard coming in) and ask ballpark how long it takes between the intake appointment with the nurse and actually traveling to NJH. The operator wouldn’t let me talk to anyone in the clinic because I haven’t been assigned a doctor.

    But she did say it could be 2-6 weeks between intake and arrival at NJH. 😢 

    hmmm, I might keep my 4/17 appointment at U Colorado while waiting for NJH. The bummer is I really like the U Colorado pulmo but he’s not in network (Sigh). Eh, whatever, I’ll pay out of pocket for an easily accessible wonderful doc! Being a patient is tough. 

  • Pljohns

    Em-so glad you have the ball rolling and that they are in network  That's the best news yet-at least before you get there anyway-so hoping they can help you find something that works for you.  You are right-your kids need you around.

  • Deborah Bartlett
    Pljohns posted:

    Em-so glad you have the ball rolling and that they are in network  That's the best news yet-at least before you get there anyway-so hoping they can help you find something that works for you.  You are right-your kids need you around.

    Her kids sure do need her around. We need her around too! 💕

  • Emelina

    Thanks Lynn! Gotta keep kicking the ball forward. A bit bummed, my IgE level came back too low for xolair, but I was warned the results wouldn’t be as accurate given all of the prednisone. Maybe there’s hope for qualifying for nucala via a sputum eosinophil count. 🤞 but not to over think it now; just gotta keep myself well and get my hind quarters to Denver! 

    Lol! Debbie! When I get mad at the automated voice systems I either keep saying no or don’t speak until it defaults to a person! 😈

  • Kathy P

    Em – I hope that an evaluation at NJH will really help for you!

    Not sure if you've already seen this topic, but @GigiGibson went to NJH and .

  • Deborah Bartlett
    Emelina posted:

    Thanks Lynn! Gotta keep kicking the ball forward. A bit bummed, my IgE level came back too low for xolair, but I was warned the results wouldn’t be as accurate given all of the prednisone. Maybe there’s hope for qualifying for nucala via a sputum eosinophil count. 🤞 but not to over think it now; just gotta keep myself well and get my hind quarters to Denver! 

    Lol! Debbie! When I get mad at the automated voice systems I either keep saying no or don’t speak until it defaults to a person! 😈

    📞🙎📼🙎👄📞

    Ah…. the good old days when things were real! Even people!!

  • Emelina

    Thanks Kathy! Yup, I’ve read over her experience and some other older conversations about members’ NJH trips. Excited for my turn to come up … eagerly waiting to see experts and feel better. 

  • Emelina

    Yes! After hitting road blocks with the formal system of calling the operator, I emailed the doctor directly and squeaked. He said no problem, he’ll make arrangements for a clinic visit at NJH in 2 weeks while we wait to get the longer evaluation to be set up/scheduled. So happy. Someone pinch me. 

    The moral of the story, if you don’t like how things are going, start squeaking!  Self advocacy feels good.

  • Emelina

    Phone RN Intake done! Actually went pretty fast. It was rather straightforward. She asked about meds, respiratory symptoms (cough, dyspnea, wheeze), any respiratory workup (pft, bronch, biopsies), then went through a big list of questions looking for comorbid conditions like sleep apnea, cardiac workup to date (echo, stress testing, exercise tolerance), any hx of ezcema, allergies (skin testing, allergy shots), gastrointestinal symptoms like heart burn or throat clearing after eating (any workup like ph, manometry, egd, colonoscopy) and any rheumatologic disease. They also ask about any ed visits or recent hospitalizations. From here, my info goes to the providers for review and they call insurance for clearance. Once approved by insurance, then they can schedule. No time frame was provided. (Sigh). More waiting, but the ball is rolling!

  • LK

    Em,  Yayyy!!!!!  On getting the first step in the process of getting into NJH out of the way!!  Take a slow deep breath and relax for a minute – or until one of our family needs something       !!  Moms are always on call!  Hope you have a great day!  

  • Deborah Bartlett

    That's right Em! You got the ball rolling! We have to start somewhere! Now, it's a matter of having patience and waiting. We are all hoping the best for you! 😀