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Update on my trip to Jewish National

It’s been a long time since I’ve posted, I promised I’d update you on the trip to National Jewish. Well I went and can fill you in over the next couple days.  

Have a fantastic Monday!

Gigi

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  • K8sMom2002

    Gigi, I made you a bright and shiny new topic here for your update! I am SO hopeful that you learned more at National Jewish and you at least got to see parts of the country that maybe you hadn't before!

    Can't wait to hear more about your trip!

  • GigiGibson

    THank you Cynthia! 

    I had a rough time the month before my trip, a pulled chest muscle, pneumonia and the hurricane Florence for days caused a huge flare. After two ED visits and a couple doctors visits I was on 60mg of pred a day and still doing marathon nebs. Needless to say I was in horrible pain with my legs as happens with me and the roids. So by the time I got to NJH I was down to 30mg but in a wheelchair, swollen, in terrible pain but breathing well. I had to come off some meds prior to my appts and others at various times. It’s quite a job to keep up with prep for each day. 

    For instance, you may have six appointments on one day. If three are procedures or labs you may need to be off certain meds 72 hrs prior, others 24 or 48 hours prior and some 4-6 hours prior. Food and liquids are restricted at times too. Every day you have to review your list for the next few days as tests are added based on appts and findings and so forth. 

    NJH is run very well as far as schedules, no waiting hours, it’s boom boom boom. You really need to have a full time companion to assist you unless u are an athlete. I was the youngest patient I saw there in the adult hospital. 

    I had consults with two rheums. One for the dexa and osteopenia and one for my c/o pain   R/t pred use to r/o osteonecrosis. Thankfully it was negative. I do have the prior though. 

    I saw first my asthma/immun. Doctor, she ordered the battery of initial lab tests. I think I had close to 30 by the time it was done, maybe more. 51 or so tests altogether. The lab was just a walk up and do it set up, no wait.  I also saw an ENT, Laryngologist, speech therapist x 2, OT, two walk tests, eosophogram , modified barium swallow, swallowed cameras for vocal cord inspections twice, bronchoscopy with lavage, upper Gi with duodenoscopy, bioimpedence tube 24 hour probe nasal, pharmacokinetics testing, spirometry x 2, methacholine challenge, nitric oxide testing, mris, HR CTs, hearing tests, allergy testing they could not do but tried, agitated saline cardiac echo, consults with cardiologist, Gi doc, pulmonologist and a f/u with the asthma doc. I know I probably missed mentioning  five tests. I’ll update when I have my folder near me. 

    Each doctors appt is around an hour long. The staff at every desk and corner were amazing. I was super impressed with all but one person and for 6 full days of testing that’s spectacular. 

    My results are mostly all posted. I’m trying to figure out how I’m supposed to proceed from here . I want to send them all to my asthma and pcp docs but want all results in first. I know the AFB and other cultures will take awhile, they can go later. I want to review everything soon with my team here. 

    I really liked all of the doctors, top notch folks. 

    Unfortunately, I have mild Tracheobronchomalacia, VCD, asthma and bronchiectasis. The radiologist and pulm who did the bronch differ in their interpretations so it’s a toss up on those. The pulm said to get down on the roids and roll on with med management. I’m rather terrified and want someone to compare my HR ct from 1.5 years ago with this one to see if I just got a better reading or if I’ve had this much decline. 

    Outside of that I have recommendations for PT, f/u with ENT in 6-7 weeks for plaques on my VC (I dried up and lost my voice in 24 hrs being in Denver) it was sooooo dry. I should have bought a humidifier when I landed. Water therapy if available, lose some weight, start plant based diet (cardio doc) . Being that I had acute muscle injury with the pred, my DHL was 397 and total protein low, I am not doing that yet. I’ve been craving meat, now I know why. 

    All of my immune tests were normal, no lupus or sjogrens or such. My pred dose was such I passed the metacholine bucket of insults and they couldn’t even get a control rise with two skin pricks to do an allergy test, lol. So, if u are on a high dose you won’t get accurate results!

    i know it would have taken two years to get all this done elsewhere in traditional style. It was well worth it even though I hate the results. Hey did do biopsies if anything odd they found in my lungs and gi tract and all was well. I’m thankful for no cancer! 

    Let me know if you have questions. 

    G

     

  • K8sMom2002

    Oh, my goodness … I'd need six weeks to recover from all that, but how great they were able to do it all at once! 

    I do have a question: what is Tracheobronchomalacia? 

    And I'm really glad they didn't find Sjogren's or lupus or cancer! 

    Plus-plus … thanks for the insight of needing water and hydration due to Colorado's dry atmosphere. Down here in the South, we're so used to humid air that we practically have gills!

  • Shea

    Woah. That is a lot of testing! I love the information on how they ran everything there. It is a lot to process. I know I had questions pop up in my head as I was reading.

    I had to look up Tracheobronchomalacia, I just saw that on adulthood it can be caused by chronic inflammation. 

    It is too bad they couldn't do the allergy testing– I would think you could find out WHAT is causing that inflammation? (You remember me, I am paranoid about allergic inflammation my doctors had missed the war ing signs for me and it became chronic and severe) Can they do blood tests at least (I heard they can be done even while taking steroids and antihistamines) to see if they can identify  possible allergens? Did you have normal eosinophil levels in your CBCs?

    I also stress about lowering on prednisone whenever there is inflammation or signs of it– so I guess If ask, how will you know if it is coming back, what do your doctor's need to monitor in labs and in tests? Also what is their recommended schedule for coming down on long-term prednisone? Is there anything to help with adrenal fatigue as you lower— a d what foods help your body make adrenaline a d cortisol when it starts to need to make its own after not doing so for so long?

    If your protein is low, how can you get it higher while eating a plant-based diet? Will you get referred to a nutritionist to help you and monitor it?

    Also, on the VCD, is it caused by long-term inhaled steroids or inhalers or dry air or both– is it tied to powdered inhalers or are the ones that are not powders better for it or are nebulizer better? Are there lozengers, humidifiers or recommended home remedies like honey? 

    Awesome on no cancer or autoimmune diseases like lupus popping up!!!! (My immune labs come back normal even though I have an autoimmune disease because but is flagged by high eosinophils).

  • Melissa G

    Wow! That sounds like an amazing trip! I hope the rest of the test results come back soon and you are able to get a game plan quickly. 

  • Shea

    I just looked up plant-based diet on google and then something called flexitarian popped up that talks about making the vegetables the star of the meal and the protein small– I am not sure if that is a type of plant-based or if plant-based means vegetarian? But I like the sound of it! I really need to try and get more yummy vegetables in so I am going to be looking at recipes but if you do talk to the doctor more about it , or know more about it– Id love to know!

  • Brenda Silvia-Torma

    Hi @GigiGibson, Thanks for the update on how you're doing!  Wow NJH was soooo thorough, it's amazing how much you got done in a short 6 days.  Wow! 

    So glad that your lungs showed no sign of cancer! It sounds like you have a few follow up appointments with local docs?  What's your next step?

    Thanks!

    Brenda

  • Pljohns

    WOW Gigi-I"m not sure I would have made it through all of that!  No wonder they are the leading center for asthma!!!  At least they didn't find anything awful ad hopefully you will get all the results back soon and can go over them with your local team.  please keep us posted on what they say!

  • LK

    Gigi,  That is an impressive array of tests you went through in a short amount of time!  That is a good idea to have someone with you who can help keep track of everything.  Hope you get the rest of your test results back soon and find some meds/treatments that will help you feel better.

  • GigiGibson

    Hey guys, thanks for the support! They tell me to wean my pred as I am able. My goal is always to get to the lowest I can, they say it’s possible I may come off but it’s not guaranteed. 7.5 daily is acceptable to them. Our old goal was 10 every other day . We shall see….

    As far as the diet, I was vegetarian almost three years before all this happened. I went on very strict anti inflammatory diet a while back and while it helped my gerd it was stressing me out it was so much work. The cardiologist is very much about finding something that brings you joy, making connections  30 minutes a day, walking until breathless every day for exercise and eating a plant based diet meaning vegan and no junk or processed stuff. I’m taking collagen supplements now and doing plant protein drinks and eating some meats like fish and grass fed beef. Avoiding dairy and gluten. My celiac was negative but it makes my belly swell sometimes. 

    Now on to the TBM. This is scary. I am thankful they say mild but I am still scared. It tends to worsen when adult onset. It’s like a cartilage issue right? Isn’t VCD too?? There is a surgery for it and it’s supposed to cure it but I’ve found out it doesn’t always work. Intubation can be deadly with TBM. It makes you susceptible to infections and airway collapse. 

    The bronchiectasis is thickening of the airways causing infections and mucus plugs. It also tends to digress. I’ve had many patients with it, they are always complex and very ill. 

    My asthma, those who know me, has been fast and furious. Zero (ok maybe a 2 undiagnosed) to 60 in 2.5 years. I went from a little sob when I had a cold and a dry cough at night to oral steroids daily, three maintenance inhalers, budesonide and duonebs and albuterol nebs and inhaler and singulair and fasenra in less than twelve months.  Haven’t been able to get off either. 

    The VCD I think is a big contributor to my issues and I struggle with my voice, clearing my voice, I think it is to blame for that now instead of the asthma. I’m not having many attacks right now on this dose of pred but lots of mucus as I taper. It’s always in my throat, I don’t have like stuff coming up, just have to clear my voice and throat. I’d be hard pressed to have to expectorate. 

    Well that was fun conversation. So when I have a symptom arise I try to figure out which one is causing the issue….is it the VCD, the lungs or the TBM? I do the breathing speech taught me for VCD first. If it’s a cough reflex I do the cough suppressing exercise they taught me in Speech. If I know I need to cough to clear something I do the huff cough the SLP taught me on the phone yesterday. If symptoms continue or mucus keeps building I will do my inhaler or a neb to gets things thinned and moving. 

    The TBM I don’t know, I try to look it up and get freaked out at the gloomy literature out there and have to stop. 

    I heard back today from my ambassador at NJH, she said after all results are in I will hear from medical records and have a sunmary. Could take 4-6 weeks. 

    I practice my diaphragmatic breathing and other ST exercises all day. I’m trying to eat well and balanced. I’m taking my meds faithfully and I got my fasenra yesterday. I joined a VCD support group and a TBM support group online. I think that it will just take time to see how low I can get in my pred taper and stay well. If I find I can’t stay well at a certain level we will decide what to do. It may be I need to go to Pt work or stop working. Pulling 40 hours takes 60 hours as I rise at 5 and get home at 5. Then there is the cooking and showering and whatever else I can manage in the evening. There is no rest. Rest could make a bigger difference than being on a moderate dose of pred and continuing to work. My body deteriorates on pred pretty bad. 

    We shall see. I’ll let I know when I get more results. 

     

  • Brenda Silvia-Torma

    Hi Gigi, that's great you found a support group for VCD and TBM. Could you decrease your hours for a little or maybe ask to work from home once or twice a week?

    Sending good thoughts to you!

  • Shea

    Thank you Gigi for all that wonderful info (including the technically "unwonderful stuff") because it really is so helpful to know about different tests, diagnoses, diets, and treatments out there. 

    I really do like what your cadiologist said about walking until breathless, making connections every day, making eating non-stressful with attempts to maximize good quality, healthy foods and avoid things that cause discomfort. 

    I think its great you joined some other support groups for these new things like vocal chord dysfunction, and that you learned some new techniques to differentiate and treat each related breathing issue. It sounds complicated, but I bet with practice itll start to be automatic over time. 

    I get you on wanting to get off the prednisone!!! (Or at least Lower which the goal is 10 mg for me– ive been stuck at 20!) I am about to leave to the pharmacy to pick up some rx nasal spray (and i hate nasal spray) along with another antihistamine AND I am starting to carry my mask in an easy access side bag so I will actually USE it when around triggers now because I am super-desperate to feel well enough to lower this prednisone!) 

     

  • K8sMom2002

    Hugs, Gigi! It's always scary to have a diagnosis that can get worse and that is also uncommon. 

    So glad you have reached out for support! I took a quick peek at some info about it, and it sounds like this is like many disorders and is on a spectrum. Am I wrong to hope that you're on the mild end of the spectrum?

    I can understand why learning that intubation can be more complicated with this would be worrisome. Have you considered adding this info to your medical alert bracelet if you wear one? 

  • Melissa G

    Hi Gigi, how are you doing? How have you been handling all of the information you received at National Jewish?